Only one week to go now until I hit 30! A number I was terrified of for a long time as I didn't know what would happen with my life and had a lot of uncertainty with how my economy would look like. In late August I finally managed to relax a little, I got THE letter, the letter that told me I had been awarded full, permanent disability as of October 2015 when I turn 30.
It's not something I wanted of course, but considering how my body is behaving, it's a necessary evil and I'm very happy that the system exists for when it's needed. I felt a kind of sad relief upon reading that letter, mostly relief as it meant I'll have a reliable income until I reach 65, but sadness because I only got a handful of years of working in my life, and left the job market before I even turned 26 because of the effects of my Ehlers-Danlos Syndrome that at that time was yet to be diagnosed.
A big part of my life is spent horizontal due to the intense pain and fatigue I'm experiencing every day. If I am to attend some activity I often need to rest up both before and after, and recovering from one single activity can take several days. Post exertion malaise at its finest or something... I have not been checked for ME/CFS but I have a lot of the symptoms associated with it, so I wouldn't be at all surprised if I have both Ehlers-Danlos Syndrome and ME/CFS, but getting another chronic, debilitating diagnose wouldn't really change a thing in my day to day life, and I was awarded my disability based on how my EDS is affecting me and how my day to day life looks like, so yeah, an additional diagnose that can't really be treated efficiently, won't make a difference in my life.
While I do feel some sadness about my inability to work, I am entering my 30's as a very happy individual who despite life's hardships holds her head high (sometimes with the help of an Aspen Vista neck brace), feel that she has accomplished things in life and make a difference for people. I am where I want to be in life and am not bitter about not being able to work even though I miss working, I'm not bitter about being disabled, instead I embrace the positive aspects of the life I live and make the most of it.
I have no fear of items that can help me live a more full life, like braces, medication and mobility aid. I have embraced my wheelchair and made it into a friend that enables me rather than disables me. My condition and disability has opened a whole new world to me, given me new interests and new friends from all over the world, and in all honesty: I wouldn't want to change a thing! (other than getting my work ability back)
Wheelchair technique and skills have become a bit of a passion to me, I'm constantly working on improving my balance and skills, and only just the other day I took a new step by trying going down a few steps in my wheelchair! I went down backwards as that's easier than bumping down on the back wheels in a wheelie, and I did great! Next step is to do it with more steps, and then learn to bump down in a wheelie as well, it's one of my big goals with my wheelchair skills!
In my nearing 30 years of life this far I have (without any order) traveled around in most of Scandinavia, visited North Cape three times before I even hit my teens, swimming in a lake on the North Cape island (that's like 71 degrees north!), I've been swimming in a fjord only a few hours drive south of North Cape, I've seen the midnight sun countless of times, seen a whale in a fjord, seen seals in the fjords, petted reindeer, seen a snowy owl in the wild (I LOVE owls), gone out on a bird safari by boat, fishing in a fjord in the midnight sun, been out in a forest at dusk and heard owls all around, seen the Aurora Borealis many times, seen the Aurora Borealis together with a comet, seen a complete lunar eclipse, been in an article in a pop magazine, met celebrities, won a trip overseas, been backstage at a tv show in Los Angeles, been to a concert with my absolute favorite band ever: Queen, seen Queen's private jet at the airport, been late to work because of President Obama visiting the city I lived in, seen the Swedish and Danish royal families in a mall, been married, gotten divorced, traveled to China three times, sat on The Great Wall enjoying the view and looking at the tourists on the other side of the road, seen the Olympic stadiums in Beijing, traveled by night train in China, traveled by Maglev train in Shanghai, had better chopstick skills than Chinese nationals, had my drivers license for 11 years, visited every region except for one in Sweden, visited (transfer or more): Norway, Finland, Denmark, United Kingdom, Portugal, Germany, Netherlands, China, USA, Poland and Greece, seen the sunrise over Mongolia, lived abroad (in Denmark), become an accessibility activist, occupied a tram together with 9 others in wheelchairs, gotten less shy, piloted a Jas39 Gripen figther jet (only a simulator, but still!) and much more!
My life has been anything but boring! I've seen and done so much both before and after my Ehlers-Danlos Syndrome became obvious. I live a pretty awesome life despite the limits that Ehlers-Danlos Syndrome causes. I focus on the positive rather than being bitter about the things I can no longer do.
I know I may be facing major surgery down the road because of my condition, I've already had one major surgery that Ehlers-Danlos Syndrome was likely the cause of- Two years ago, I had a complete hysterectomy and since then only have my ovaries left. If it wasn't for Ehlers-Danlos Syndrome, it's not likely I would have needed the surgery. Do I miss my ability of having biological children? Nope, not at all! I've never really been fond of children and because of my condition, a pregnancy would have been high risk and with a high risk of disabling me for life because of how I reacted negatively just to hormone contraceptives that were used to try to manage my periods before I had my surgery. I got much worse very fast with mini pills and hormone IUD, and even with it being over two years since I had anything more than just my ovaries, I'm battling pelvic issues that are normally associated with someone who's given birth to several children vaginally. I've never even been pregnant!
The rapid decline because of the hormones is one of the many reasons why I'm barely able to walk any longer and use my wheelchair close to 100% of the time when I'm not at home. It's simply not safe for me to walk, nor is it very effective along with causing a lot of pain and fatigue afterwards. It's simply not worth it to walk more than I absolutely have to, which means I walk at home within my apartment as it's not very accessible. I am not bitter about being in a wheelchair. As I mentioned earlier, it is my friend which enables me rather than disables me. It opened a new world with new possibilities and interests and friendships. I wouldn't change a thing!
In a couple of weeks I'll be in Stockholm at a camp for teens and young adults with physical disabilities, I went last year as well and had a blast! I'm really looking forward to the camp this year as well and can't wait! The place the camp is held at is very cozy, yet with a very inspirational atmosphere too it as it's a place where the Swedish elite athletes goes to exercise before major events. There's something special about trying various adaptive sports in the same arenas as the elite spends a lot of time in and walk (roll) in the same corridors, it's a lot of fun too, to meet others with disabilities and play sports together and just hang out, learn things and have fun!
Last year at the camp, I had a doe outside of the hotel room window one morning, and from the conference building you see parts of the archipelago. It's truly an amazing place!
Now I need to try to sleep, I've got a busy week ahead with a couple of meetings, some regular stuff I need to do (like laundry) and I also need to bake a cake as I've promised to bring cake to the next board meeting which is on Friday, because of my birthday next week. My friends in the board of the Gothenburg branch of the organization for young people with disabilities, mean a lot to me, as does the organization as a whole! Other than bringing cake to that meeting on Friday, I'm not really going to celebrate my 30th much. Will probably just have a quiet day with my parents on Monday, maybe we'll go out somewhere to have dinner, but I haven't planned for any party or organized celebration as that's just not my thing. I don't like to be the center of attention, and it feels awkward when people sing and I don't really care about gifts either. So it will just be a quiet day with some cake I think.
Monday, October 12, 2015
Saturday, September 5, 2015
Public service announcement!
Now first of all, I am not a medically trained person, nor do I live with the diagnose in question. I'm just someone who's taken the time and effort to read and learn, so that friends with the diagnose in question can feel safe when we hang out, and can come to me for support if they need to. I am a so called Type 3. I am of course talking about diabetes.
Having started to read about it in high school or just before due to having schoolmates and later, friends living with type 1 diabetes, I've had time to learn a fair bit through the years (probably some 15 years by now) about the differences between the various types of diabetes and its management.
It really grinds my gears when I hear someone say "oh, you have the bad diabetes" when someone who's insulin dependent either takes out their syringe, pen or insulin pump to take some insulin to correct a high blood glucose reading or cover for a meal or snack.
Now, there's no such thing as "bad diabetes" or even "bad diabetics" A diabetic taking insulin doesn't mean he or she got the bad diabetes, it merely means that he or she is an insulin dependent diabetic either because of an autoimmune reaction that ruined the insulin producing beta cells in the pancreas, or too little insulin is produced, or the person has some resistance to insulin and need more than the body produces itself.
Type 1 diabetes which is autoimmune, can hit someone at any time in their life though the most common is to be diagnosed in childhood to early adulthood sometime. Type 1 is always insulin dependent since the insulin production has been greatly reduced or completely eliminated due to the autoimmune reaction that attacked the insulin producing cells. Insulin has to be injected in some way as the gastric juices ruins the insulin, these injections can be done either with a single use syringe, a pre-filled or re-usable pen where you just change the needle for each injection and throw away the pre-filled pen when empty or put in a new cartridge of insulin if it's a re-usable pen, or you can use an insulin pump which gives a continuous infusion of insulin at a rate that you program it to and can set different rates per hour for different times of the day if you need to.
The body needs insulin both to function in general, but also to handle anything that you eat. Normally someone using syringes or pens will have two types of insulin, one slow acting which is injected once or twice daily, and one rapid acting to cover for meals, snacks or random high glucose levels. Someone using an insulin pump normally only have rapid acting insulin, and as mentioned above, the pump continuously gives insulin at the rate you've set it to, and for meals, you use the pump to give a dose that you select there and then based on what you're eating, what you're doing, current blood glucose, insulin to carbohydrate ratio, correction factor and sometimes even more factors are involved in determining the dose needed. Taking insulin for meals is the same regardless of delivery method, the only difference is that many new pumps can make the calculations for you, and that you can take a more precise dose compared to pens or syringes.
Whether an individual use a syringe, pen or pump is all about personal preference (and in the case of USA, what you can afford and what the insurance company will cover for you)
Each delivery method has both pro and cons though in general a pump is considered to give more freedom as you can set the delivery rate to fit your daily life more accurately. With a long acting insulin you can't make any changes here and now, nor can you get different doses at different times throughout the day. With a pump you can have for example 0.5 units of insulin per hour during some hours of the day, 0.75 unit per hour another time of the day and maybe you have the so called dawn phenomenon where the liver dumps out glucose to start waking you up in the early hours of the morning, with a pump you can program the pump to give a higher basal dose at the time where the dawn phenomenon occurs.
Wearing a pump doesn't mean someone has bad diabetes, or is a brittle diabetic or anything. It's just a personal preference to push some buttons instead of taking an injection several times per day, along with being able to have a tighter control over the blood glucose. The downside with a pump is that if it malfunctions and you don't catch it on time, you may end up with dangerously high glucose levels as you have no long acting on board to keep you level like you do on injections. Also, some people don't like the idea of being attached to something at all times.
As for type 2 diabetes, it's not autoimmune and may or may not require insulin injections. Normally it is diagnosed in adulthood but it's not unheard of in children and young adults. Genes play a big role in whether you get type 2 diabetes or not, it tends to run rampant in families and even keeping your weight at a good level and living a generally healthy life is not a guarantee to avoid developing type 2 diabetes, even though it's said to help preventing development of type 2 diabetes. Type 2 diabetes can also be associated with some medicines or other health issues, such as PCOS (Poly Cystic Ovary Syndrome) where your weight or lifestyle doesn't play a big role at all. Type 2 is not a fat person disease and no one who is diagnosed with type 2 diabetes has brought it onto themselves! Diabetes doesn't care what size you are!
Type 2 diabetes can be treated with a healthy lifestyle, tablets that lowers blood glucose either by making the pancreas produce more insulin or make the body more sensitive to the insulin produced, insulin through the same delivery methods as for type 1 diabetes, or injections of some fairly new medicines that also makes the body more sensitive to insulin.
Someone with diabetes will have both high and low blood glucose levels, no matter what they eat and how often they test blood glucose levels. The glucose does fluctuate all the time, it does in non diabetics as well, only that the body compensates for it automatically in a non diabetic and the fluctuations are less extreme. Someone with diabetes has to maintain a healthy glucose level by doing the things their body does no longer do on its own.
When someone has a low blood glucose it's very important for the person to eat something that contains carbohydrates, preferably simple carbohydrates like glucose as it enters the bloodstream faster than complex carbohydrates like starches. You do NOT give insulin to someone who has a LOW blood glucose!
In severe cases where the person is unresponsive, call for an ambulance immediately and if the person has a Glucagon kit and you know how to use it, administer glucagon as it will make the liver dump out glucose which will bring the glucose levels up. Eating something is important to not crash again. Severely low blood glucose left untreated may cause coma or even death.
Symptoms of low blood glucose includes but is not limited to: tiredness, shakiness, confusion, hunger, headache, mood swings
When someone has a high blood glucose it's important to get the glucose level down again, this can be done either by taking insulin, exercise some or in some cases, take extra medicine. Drinking fluid (sugar free) can help lower the levels some as well by flushing the system a bit. Nevertheless, it's important to stay hydrated, high blood glucose levels often cause the person to need to pee more which may rapidly lead to dehydration. Just keep in mind that only drinking water may wreck havoc with the electrolyte levels, so make sure to get some salts as well.
In severe cases where the person is unresponsive, call an ambulance. If ketones are present, you need to at least call a doctor unless you know how to handle it. The combination of high blood glucose and ketones may lead to a condition called Diabetic Ketoacidosis or DKA for short and it is a medical emergency. DKA is most common in type 1 diabetes, and is quite frequently seen in persons who are unaware of their diabetes before getting diagnosed.
DKA left untreated may cause coma or even death!
Symptoms of high blood glucose includes but is not limited to: excessive thirst, needing to pee often, tiredness, hunger, mood swings
Ketones is a waste product from the body burning fat for energy instead of glucose. Ketones in the combination with high blood glucose always needs to be taken seriously. It is not the same as having ketones in the bloodstream from eating a very low carbohydrate diet where ketones are desired.
I write this post as the basic knowledge around diabetes is very poor among the general public. Basic knowledge about one of our most common chronic conditions that comes with rapid changes that can quickly become dangerous unless treated correctly. It doesn't take long to learn how to recognize a low blood glucose and how to handle it, and it only takes a second to ask someone "Are you feeling okay?" if you see someone who doesn't look like he or she is feeling well and you recognize the signs. Don't assume that the person is drunk or on drugs!
Again, I'm not a doctor so don't use this post instead of seeking medical attention, nor use it as medical advice. I just wish to show some differences between the most common types and hopefully get rid of some misconceptions about both diabetes and how to help someone with diabetes who's having a rough time with their blood glucose.
It's sadly all too common that people think low blood glucose means needing insulin, when in fact it could be fatal to give insulin when someone has a low blood sugar.
People with diabetes got the condition for often unknown reasons, they did not eat too much sugar in their childhood!
Someone with diabetes can eat whatever they want, as long as it is covered for. But if you have someone over who has diabetes, don't assume that they'll want to have something very loaded with carbohydrates, have some various choices of foods and snacks and let the person choose instead, and don't question them if they have a piece of cake, or say no thanks to the very same cake.
Why I even write a long post like this?
Well, it happened again... A friend of mine who's had type 1 diabetes since long before I was born, had a nurse ask if it was the "bad diabetes" just because the insulin pump beeped! I mean seriously! A NURSE! *sighs*
End of rant and public service announcement. Have a nice day and now I shall continue to listen to music.
Having started to read about it in high school or just before due to having schoolmates and later, friends living with type 1 diabetes, I've had time to learn a fair bit through the years (probably some 15 years by now) about the differences between the various types of diabetes and its management.
It really grinds my gears when I hear someone say "oh, you have the bad diabetes" when someone who's insulin dependent either takes out their syringe, pen or insulin pump to take some insulin to correct a high blood glucose reading or cover for a meal or snack.
Now, there's no such thing as "bad diabetes" or even "bad diabetics" A diabetic taking insulin doesn't mean he or she got the bad diabetes, it merely means that he or she is an insulin dependent diabetic either because of an autoimmune reaction that ruined the insulin producing beta cells in the pancreas, or too little insulin is produced, or the person has some resistance to insulin and need more than the body produces itself.
Type 1 diabetes which is autoimmune, can hit someone at any time in their life though the most common is to be diagnosed in childhood to early adulthood sometime. Type 1 is always insulin dependent since the insulin production has been greatly reduced or completely eliminated due to the autoimmune reaction that attacked the insulin producing cells. Insulin has to be injected in some way as the gastric juices ruins the insulin, these injections can be done either with a single use syringe, a pre-filled or re-usable pen where you just change the needle for each injection and throw away the pre-filled pen when empty or put in a new cartridge of insulin if it's a re-usable pen, or you can use an insulin pump which gives a continuous infusion of insulin at a rate that you program it to and can set different rates per hour for different times of the day if you need to.
The body needs insulin both to function in general, but also to handle anything that you eat. Normally someone using syringes or pens will have two types of insulin, one slow acting which is injected once or twice daily, and one rapid acting to cover for meals, snacks or random high glucose levels. Someone using an insulin pump normally only have rapid acting insulin, and as mentioned above, the pump continuously gives insulin at the rate you've set it to, and for meals, you use the pump to give a dose that you select there and then based on what you're eating, what you're doing, current blood glucose, insulin to carbohydrate ratio, correction factor and sometimes even more factors are involved in determining the dose needed. Taking insulin for meals is the same regardless of delivery method, the only difference is that many new pumps can make the calculations for you, and that you can take a more precise dose compared to pens or syringes.
Whether an individual use a syringe, pen or pump is all about personal preference (and in the case of USA, what you can afford and what the insurance company will cover for you)
Each delivery method has both pro and cons though in general a pump is considered to give more freedom as you can set the delivery rate to fit your daily life more accurately. With a long acting insulin you can't make any changes here and now, nor can you get different doses at different times throughout the day. With a pump you can have for example 0.5 units of insulin per hour during some hours of the day, 0.75 unit per hour another time of the day and maybe you have the so called dawn phenomenon where the liver dumps out glucose to start waking you up in the early hours of the morning, with a pump you can program the pump to give a higher basal dose at the time where the dawn phenomenon occurs.
Wearing a pump doesn't mean someone has bad diabetes, or is a brittle diabetic or anything. It's just a personal preference to push some buttons instead of taking an injection several times per day, along with being able to have a tighter control over the blood glucose. The downside with a pump is that if it malfunctions and you don't catch it on time, you may end up with dangerously high glucose levels as you have no long acting on board to keep you level like you do on injections. Also, some people don't like the idea of being attached to something at all times.
As for type 2 diabetes, it's not autoimmune and may or may not require insulin injections. Normally it is diagnosed in adulthood but it's not unheard of in children and young adults. Genes play a big role in whether you get type 2 diabetes or not, it tends to run rampant in families and even keeping your weight at a good level and living a generally healthy life is not a guarantee to avoid developing type 2 diabetes, even though it's said to help preventing development of type 2 diabetes. Type 2 diabetes can also be associated with some medicines or other health issues, such as PCOS (Poly Cystic Ovary Syndrome) where your weight or lifestyle doesn't play a big role at all. Type 2 is not a fat person disease and no one who is diagnosed with type 2 diabetes has brought it onto themselves! Diabetes doesn't care what size you are!
Type 2 diabetes can be treated with a healthy lifestyle, tablets that lowers blood glucose either by making the pancreas produce more insulin or make the body more sensitive to the insulin produced, insulin through the same delivery methods as for type 1 diabetes, or injections of some fairly new medicines that also makes the body more sensitive to insulin.
Someone with diabetes will have both high and low blood glucose levels, no matter what they eat and how often they test blood glucose levels. The glucose does fluctuate all the time, it does in non diabetics as well, only that the body compensates for it automatically in a non diabetic and the fluctuations are less extreme. Someone with diabetes has to maintain a healthy glucose level by doing the things their body does no longer do on its own.
When someone has a low blood glucose it's very important for the person to eat something that contains carbohydrates, preferably simple carbohydrates like glucose as it enters the bloodstream faster than complex carbohydrates like starches. You do NOT give insulin to someone who has a LOW blood glucose!
In severe cases where the person is unresponsive, call for an ambulance immediately and if the person has a Glucagon kit and you know how to use it, administer glucagon as it will make the liver dump out glucose which will bring the glucose levels up. Eating something is important to not crash again. Severely low blood glucose left untreated may cause coma or even death.
Symptoms of low blood glucose includes but is not limited to: tiredness, shakiness, confusion, hunger, headache, mood swings
When someone has a high blood glucose it's important to get the glucose level down again, this can be done either by taking insulin, exercise some or in some cases, take extra medicine. Drinking fluid (sugar free) can help lower the levels some as well by flushing the system a bit. Nevertheless, it's important to stay hydrated, high blood glucose levels often cause the person to need to pee more which may rapidly lead to dehydration. Just keep in mind that only drinking water may wreck havoc with the electrolyte levels, so make sure to get some salts as well.
In severe cases where the person is unresponsive, call an ambulance. If ketones are present, you need to at least call a doctor unless you know how to handle it. The combination of high blood glucose and ketones may lead to a condition called Diabetic Ketoacidosis or DKA for short and it is a medical emergency. DKA is most common in type 1 diabetes, and is quite frequently seen in persons who are unaware of their diabetes before getting diagnosed.
DKA left untreated may cause coma or even death!
Symptoms of high blood glucose includes but is not limited to: excessive thirst, needing to pee often, tiredness, hunger, mood swings
Ketones is a waste product from the body burning fat for energy instead of glucose. Ketones in the combination with high blood glucose always needs to be taken seriously. It is not the same as having ketones in the bloodstream from eating a very low carbohydrate diet where ketones are desired.
I write this post as the basic knowledge around diabetes is very poor among the general public. Basic knowledge about one of our most common chronic conditions that comes with rapid changes that can quickly become dangerous unless treated correctly. It doesn't take long to learn how to recognize a low blood glucose and how to handle it, and it only takes a second to ask someone "Are you feeling okay?" if you see someone who doesn't look like he or she is feeling well and you recognize the signs. Don't assume that the person is drunk or on drugs!
Again, I'm not a doctor so don't use this post instead of seeking medical attention, nor use it as medical advice. I just wish to show some differences between the most common types and hopefully get rid of some misconceptions about both diabetes and how to help someone with diabetes who's having a rough time with their blood glucose.
It's sadly all too common that people think low blood glucose means needing insulin, when in fact it could be fatal to give insulin when someone has a low blood sugar.
People with diabetes got the condition for often unknown reasons, they did not eat too much sugar in their childhood!
Someone with diabetes can eat whatever they want, as long as it is covered for. But if you have someone over who has diabetes, don't assume that they'll want to have something very loaded with carbohydrates, have some various choices of foods and snacks and let the person choose instead, and don't question them if they have a piece of cake, or say no thanks to the very same cake.
Why I even write a long post like this?
Well, it happened again... A friend of mine who's had type 1 diabetes since long before I was born, had a nurse ask if it was the "bad diabetes" just because the insulin pump beeped! I mean seriously! A NURSE! *sighs*
End of rant and public service announcement. Have a nice day and now I shall continue to listen to music.
Thursday, August 20, 2015
Thoughts and travels
I haven't written in a long time now (again), the summer has been pretty busy and I've been pretty tired too.
I'm currently in a period of watching movies a lot to have something to do while resting, the movies of choice at the moment is the Star Wars movies as I've always loved them all, and have been fascinated with the universe ever since I was in elementary school. I even dreamed of becoming an astronaut when I was in 2nd grade...
The Star Wars movies are interesting too as they may very well be reality in another galaxy or a parallel universe that we just have not found yet, nor have the technological advancement to visit today.
I firmly believe that we are not alone in the universe, and I firmly believe that there's intelligent life somewhere else in the universe, intelligent life that makes us humans on earth look like cave men in comparison.
I also believe that our definition of habitable may not apply for all kinds of intelligent life. Maybe on another planet, the inhabitants breathe another gas than oxygen, and consider oxygen as bad we do with for example propane gas when it comes to breathing.
Our knowledge about the universe is also very narrow even though we know a lot more about it today than we did 100 years ago. Today we're still lacking the technology that is needed to explore more, and we're yet to develop a way of transportation that can cover great distances in a reasonable time. But I firmly believe that in the future, deep space travel will be quite possible. It's all about finding out how. In another galaxy we don't have the technology to explore yet, intelligent life forms may already be traveling between planets and planet systems. We just don't know about it because we can't see it and have a hard time imagining that there may be life out there that is greatly ahead of our own intelligence and technological advancement.
As for traveling, I haven't been to deep space *duh* but I did travel some last week. Last week a couple of friends and I were on vacation to Crete. It was my first charter vacation since 2002 and it was absolute bliss to just spend a week by the pool and sea, and catching some sun and enjoying the warm weather! Managed to not even get burnt in the sun, despite spending all day in the sun by the pool and the UV index reaching 10 (it reaches 5 here in summer, 6 if the ozone layer is unusually thin), SPF50+ kept us safe! I did feel better in Crete as well, not as much pain as I have at home, most likely due to the warm weather and the humidity being just right for me, I felt a bit more like a well oiled machinery. Same effect as I had in China in 2010 actually. I wish I could be in that environment more...
I absolutely love Crete! Just wish the accessibility was better so I could explore more. I had to leave my wheelchair at the hotel room all week because it was not possible to use the wheelchair due to narrow sidewalks, high curbs and such, so I mostly stayed at the hotel as my ability to walk is very limited. But other than the poor accessibility, I love it! Crete has such stunning scenery, and the people are so kind!
Now I've been back home since Saturday morning, and I'm paying physically for the trip as I did walk too much while in Crete and the flight took a toll on me as well. I've been in a lot of pain this week and felt very tired. My lower back, SI joints, hips and neck are not pleasant at all... Just today I have been mostly bed bound due to a bad headache from my neck, and had to wear my Aspen Vista collar to manage to attend an important meeting. Earlier in the day I couldn't even be upright without feeling like my head was about to fall off of my neck and explode.
A couple of days ago I was just sitting in my wheelchair at a neighborhood meeting and as I was going to fill a cup of water by the sink, my left hip subluxed just by me turning around slightly in my wheelchair.
My joints are unstable in every direction, and it seems, especially sensitive to being pulled. Even a very slight pull in a finger can completely separate my joints in that finger and my wrist for example. A slight pull on my arm and I feel my shoulder separating. So maybe me turning in the wheelchair a bit was enough of a pull for my hip to try to take a stroll on its own.
Now I need to try to take a shower. I'm really too tired, but I don't want to look like shit tomorrow when going outside, it's really enough feeling like shit most of the time without looking as bad as you feel...
I'm currently in a period of watching movies a lot to have something to do while resting, the movies of choice at the moment is the Star Wars movies as I've always loved them all, and have been fascinated with the universe ever since I was in elementary school. I even dreamed of becoming an astronaut when I was in 2nd grade...
The Star Wars movies are interesting too as they may very well be reality in another galaxy or a parallel universe that we just have not found yet, nor have the technological advancement to visit today.
I firmly believe that we are not alone in the universe, and I firmly believe that there's intelligent life somewhere else in the universe, intelligent life that makes us humans on earth look like cave men in comparison.
I also believe that our definition of habitable may not apply for all kinds of intelligent life. Maybe on another planet, the inhabitants breathe another gas than oxygen, and consider oxygen as bad we do with for example propane gas when it comes to breathing.
Our knowledge about the universe is also very narrow even though we know a lot more about it today than we did 100 years ago. Today we're still lacking the technology that is needed to explore more, and we're yet to develop a way of transportation that can cover great distances in a reasonable time. But I firmly believe that in the future, deep space travel will be quite possible. It's all about finding out how. In another galaxy we don't have the technology to explore yet, intelligent life forms may already be traveling between planets and planet systems. We just don't know about it because we can't see it and have a hard time imagining that there may be life out there that is greatly ahead of our own intelligence and technological advancement.
As for traveling, I haven't been to deep space *duh* but I did travel some last week. Last week a couple of friends and I were on vacation to Crete. It was my first charter vacation since 2002 and it was absolute bliss to just spend a week by the pool and sea, and catching some sun and enjoying the warm weather! Managed to not even get burnt in the sun, despite spending all day in the sun by the pool and the UV index reaching 10 (it reaches 5 here in summer, 6 if the ozone layer is unusually thin), SPF50+ kept us safe! I did feel better in Crete as well, not as much pain as I have at home, most likely due to the warm weather and the humidity being just right for me, I felt a bit more like a well oiled machinery. Same effect as I had in China in 2010 actually. I wish I could be in that environment more...
I absolutely love Crete! Just wish the accessibility was better so I could explore more. I had to leave my wheelchair at the hotel room all week because it was not possible to use the wheelchair due to narrow sidewalks, high curbs and such, so I mostly stayed at the hotel as my ability to walk is very limited. But other than the poor accessibility, I love it! Crete has such stunning scenery, and the people are so kind!
Now I've been back home since Saturday morning, and I'm paying physically for the trip as I did walk too much while in Crete and the flight took a toll on me as well. I've been in a lot of pain this week and felt very tired. My lower back, SI joints, hips and neck are not pleasant at all... Just today I have been mostly bed bound due to a bad headache from my neck, and had to wear my Aspen Vista collar to manage to attend an important meeting. Earlier in the day I couldn't even be upright without feeling like my head was about to fall off of my neck and explode.
A couple of days ago I was just sitting in my wheelchair at a neighborhood meeting and as I was going to fill a cup of water by the sink, my left hip subluxed just by me turning around slightly in my wheelchair.
My joints are unstable in every direction, and it seems, especially sensitive to being pulled. Even a very slight pull in a finger can completely separate my joints in that finger and my wrist for example. A slight pull on my arm and I feel my shoulder separating. So maybe me turning in the wheelchair a bit was enough of a pull for my hip to try to take a stroll on its own.
Now I need to try to take a shower. I'm really too tired, but I don't want to look like shit tomorrow when going outside, it's really enough feeling like shit most of the time without looking as bad as you feel...
Wednesday, April 29, 2015
Struggling
Haven't had much time nor energy to write for a while. I'm not in a great place at the moment as I've been too much as ever so often. I'm currently in a bad pain flare, my entire body feels like a huge bruise and my spine is like a misaligned mess which feels like it's been beaten badly and I have some kind of very deep pain in my spine and a feeling of things moving where it shouldn't be. My neck has been giving me spooks for days as well, with so much pain I've been feeling nauseous from pain, and my autonomous nervous system has been rather haywire as well.
Quite frankly, I'm feeling pretty damn awful! I try to hide it though, and still do things. Yesterday I went to help hosting some international guests and inform them about how we work in the organization for mobility impaired youth where I'm a board member. I really shouldn't have gone, but I wanted to, and knew it would be helpful for the others to have me there because I speak English better. Right now though, my English feels like a mess because it's kinda difficult for me to think clearly while being in this much pain- I'm seriously considering taking a rapid acting tablet right now, and I took a long acting earlier tonight, plus having my usual patch. I'm in so much pain I just feel like screaming and crying, but it wouldn't help to scream so I just try to breathe through it and think as many profane words as possible while listening to some music.
I'm seeing my doctor next week, as I turn 30 in about 6 months, it's time to talk future and permanent disability as my current disability expires when I turn 30. I haven't been able to work for 4 years, so permanent disability is the only way to go. I also need to start the process of getting a powerchair with joystick as there are times where my manual wheelchair just doesn't do it, like in winter when there's snow- I just can't propel when there's snow on the push rims. And quite often when I'm out and about for a whole day, I'd need to be able to tilt the seat and recline the back to ease the pain when I can't just go lie down for a while. Being able to literally lie down in the wheelchair would be very good for me! The powerchair would also have more support and positioning than my manual chair has, so maybe I'd even be able to use public transit with it. In my manual wheelchair the vibrations and movements of a train absolutely kills my SI joints and spine and neck. A powerchair for me will have the positioning cushions for the thighs and torso, plus a headrest so my neck will have the proper support, plus I'd be able to tilt some while traveling.
As for my manual wheelchair, I'm getting another wheelchair cushion soon that is much more stable than my current Varilite Meridian cushion. I'm getting the StimuLite Contoured Extra Sensitive cushion instead, was supposed to be just the Contoured but my region doesn't have it, only the Extra Sensitive version is available but oh well, the only difference is that the Extra Sensitive is a bit softer, I tried both versions at an expo a couple of weeks ago and both versions were really comfortable, though the Contoured felt a bit more stable which is why it was my first hand choice. I'm sure it will be great anyways! After the summer Panthera is releasing a new generation of wheelchairs so I'll most likely change manual chair then, going to try to get the carbon fiber Panthera X, but if my region refuses that, I'll go with the new U3 Light. I was told a couple of weeks ago by staff from Panthera that there's no reason whatsoever for me to be in an S2 chair when I'm so independent and do everything myself, I should have a U2 Light (or U3 Light) or preferably a Panthera X to have a chair that is as light as possible both for when I propel and for the lifting in and out of car and up and down stairs. The Panthera X weighs 2.1kg without the wheels on, that's about 5lb. For someone with wobbly joints like I have, a chair that is as light as possible is definitely a good thing! I tried a Panthera X at the expo as well and even though it wasn't the right width or anything, I got an idea of how the chair is to sit in, and it is absolutely amazing! It was my first time trying a wheelchair with very tapered front as well, and it was incredibly comfortable with the tapered front helping holding legs together! Now when I sit for a long time, I use my SI belt around my thighs to hold my legs together without having to sit and actively hold them together, it helps my hips and SI joints a lot to not have to use muscles to hold my legs together, and it's definitely better for my hips to not have my legs falling apart which happens all the time when I sit relaxed. I need something holding my legs together!
Next week I'm also meeting with an assistance company to discuss my needs and see if that's the right company for me to help me. Everyday things are becoming more and more difficult to manage, even simple things like taking a shower takes a lot of energy from me and I am not really safe taking a shower while alone at home. In the past few days, mum has been at my place while I've been in the shower because I have been feeling so poorly I was worrying about getting unwell in the shower. I can't keep up with the housework as I'd like either, because it's physically too heavy for me to manage and takes too much energy from me along with high risk of injuries and pain flares. I can't vacuum clean nearly as often as I'd like, I need to have an unplanned week basically, just to vacuum clean my living room and entrance!
I need to vacuum right now, but just can not do it! If I still can't do it in a few days time, I'll probably have to ask mum to do it for me.
But it's not my parents work to look after me! I'm almost 30 years old and even though I live in the same neighborhood as my parents and we have an amazing family relationship, I have my life and they have their life. They shouldn't need to worry about me when they go out in their camper over the weekend or on their annual 4 week vacation, or if they go on a week long bus trip. But as it is now, they do worry! They worry that I won't be able to cook for myself or have the energy to eat properly, they worry about me getting dizzy and almost passing out in the shower, they worry that I won't be able to go get groceries due to being too fatigued, they worry that I'll get a lumbago while picking something up from the floor or scoop poop in my cat's litter box, they worry about the risk of me falling and not being able to get up by myself. When they're at home and I don't pick up the phone or read/respond to a text message within a certain time, mum or dad will come over to check on me as they fear I've passed out! It will be so much easier for me, and so much easier on my parents if I get a personal assistant to help me out with the basic needs and around the house, and go with me when I go out of town= having someone who can drive when I can't or feel I need a break from driving.
I need to discuss my neck more with my doctor as well. I'm having far too many symptoms of CCI and nothing is done about it. I may very well need to look into traveling abroad to see an EDS knowledgeable neurosurgeon to get proper answers and treatment.
But none of that can be done tonight. All I can do is wait for my rapid acting medicine to kick in (I took a tablet not long ago) and then try to sleep, and prepare for a meeting tomorrow and start writing down everything I need help with so I am prepared for my meeting with the assistance company next week and my doctor. There are so many things I need to think about and remember, it feels like my brain will explode soon!
But on a brighter note, I'm getting an iPad Mini in a couple of days. My cellphone service provider called me yesterday and offered a good deal on an iPad Mini with 15GB surf each month at a good price, so I went with it! I have an old iPad 2 from 2011 but it's so heavy to hold I rarely use it, plus the mobile broadband I have on it, while no monthly fee, there's a daily fee for when I do use 3G on it so I rarely ever use anything else than wifi on it. I think the iPad Mini will be great, much lighter both due to size and it being newer, and with the internet plan on it, I won't need to think about when to use it away from wifi, I can surf as much as I like, wherever I like and I have a feeling I'll be using that iPad a lot and bring it with me very much! Really looking forward to its arrival! Hoping it will arrive already before the weekend!
Now I need to try to sleep, I'm still in ridiculous amount of pain, but the tiredness is getting overwhelming. I just wish this pain would ease just a little at least, or at the very least, not feel this goddamn bruised!
Quite frankly, I'm feeling pretty damn awful! I try to hide it though, and still do things. Yesterday I went to help hosting some international guests and inform them about how we work in the organization for mobility impaired youth where I'm a board member. I really shouldn't have gone, but I wanted to, and knew it would be helpful for the others to have me there because I speak English better. Right now though, my English feels like a mess because it's kinda difficult for me to think clearly while being in this much pain- I'm seriously considering taking a rapid acting tablet right now, and I took a long acting earlier tonight, plus having my usual patch. I'm in so much pain I just feel like screaming and crying, but it wouldn't help to scream so I just try to breathe through it and think as many profane words as possible while listening to some music.
I'm seeing my doctor next week, as I turn 30 in about 6 months, it's time to talk future and permanent disability as my current disability expires when I turn 30. I haven't been able to work for 4 years, so permanent disability is the only way to go. I also need to start the process of getting a powerchair with joystick as there are times where my manual wheelchair just doesn't do it, like in winter when there's snow- I just can't propel when there's snow on the push rims. And quite often when I'm out and about for a whole day, I'd need to be able to tilt the seat and recline the back to ease the pain when I can't just go lie down for a while. Being able to literally lie down in the wheelchair would be very good for me! The powerchair would also have more support and positioning than my manual chair has, so maybe I'd even be able to use public transit with it. In my manual wheelchair the vibrations and movements of a train absolutely kills my SI joints and spine and neck. A powerchair for me will have the positioning cushions for the thighs and torso, plus a headrest so my neck will have the proper support, plus I'd be able to tilt some while traveling.
As for my manual wheelchair, I'm getting another wheelchair cushion soon that is much more stable than my current Varilite Meridian cushion. I'm getting the StimuLite Contoured Extra Sensitive cushion instead, was supposed to be just the Contoured but my region doesn't have it, only the Extra Sensitive version is available but oh well, the only difference is that the Extra Sensitive is a bit softer, I tried both versions at an expo a couple of weeks ago and both versions were really comfortable, though the Contoured felt a bit more stable which is why it was my first hand choice. I'm sure it will be great anyways! After the summer Panthera is releasing a new generation of wheelchairs so I'll most likely change manual chair then, going to try to get the carbon fiber Panthera X, but if my region refuses that, I'll go with the new U3 Light. I was told a couple of weeks ago by staff from Panthera that there's no reason whatsoever for me to be in an S2 chair when I'm so independent and do everything myself, I should have a U2 Light (or U3 Light) or preferably a Panthera X to have a chair that is as light as possible both for when I propel and for the lifting in and out of car and up and down stairs. The Panthera X weighs 2.1kg without the wheels on, that's about 5lb. For someone with wobbly joints like I have, a chair that is as light as possible is definitely a good thing! I tried a Panthera X at the expo as well and even though it wasn't the right width or anything, I got an idea of how the chair is to sit in, and it is absolutely amazing! It was my first time trying a wheelchair with very tapered front as well, and it was incredibly comfortable with the tapered front helping holding legs together! Now when I sit for a long time, I use my SI belt around my thighs to hold my legs together without having to sit and actively hold them together, it helps my hips and SI joints a lot to not have to use muscles to hold my legs together, and it's definitely better for my hips to not have my legs falling apart which happens all the time when I sit relaxed. I need something holding my legs together!
Next week I'm also meeting with an assistance company to discuss my needs and see if that's the right company for me to help me. Everyday things are becoming more and more difficult to manage, even simple things like taking a shower takes a lot of energy from me and I am not really safe taking a shower while alone at home. In the past few days, mum has been at my place while I've been in the shower because I have been feeling so poorly I was worrying about getting unwell in the shower. I can't keep up with the housework as I'd like either, because it's physically too heavy for me to manage and takes too much energy from me along with high risk of injuries and pain flares. I can't vacuum clean nearly as often as I'd like, I need to have an unplanned week basically, just to vacuum clean my living room and entrance!
I need to vacuum right now, but just can not do it! If I still can't do it in a few days time, I'll probably have to ask mum to do it for me.
But it's not my parents work to look after me! I'm almost 30 years old and even though I live in the same neighborhood as my parents and we have an amazing family relationship, I have my life and they have their life. They shouldn't need to worry about me when they go out in their camper over the weekend or on their annual 4 week vacation, or if they go on a week long bus trip. But as it is now, they do worry! They worry that I won't be able to cook for myself or have the energy to eat properly, they worry about me getting dizzy and almost passing out in the shower, they worry that I won't be able to go get groceries due to being too fatigued, they worry that I'll get a lumbago while picking something up from the floor or scoop poop in my cat's litter box, they worry about the risk of me falling and not being able to get up by myself. When they're at home and I don't pick up the phone or read/respond to a text message within a certain time, mum or dad will come over to check on me as they fear I've passed out! It will be so much easier for me, and so much easier on my parents if I get a personal assistant to help me out with the basic needs and around the house, and go with me when I go out of town= having someone who can drive when I can't or feel I need a break from driving.
I need to discuss my neck more with my doctor as well. I'm having far too many symptoms of CCI and nothing is done about it. I may very well need to look into traveling abroad to see an EDS knowledgeable neurosurgeon to get proper answers and treatment.
But none of that can be done tonight. All I can do is wait for my rapid acting medicine to kick in (I took a tablet not long ago) and then try to sleep, and prepare for a meeting tomorrow and start writing down everything I need help with so I am prepared for my meeting with the assistance company next week and my doctor. There are so many things I need to think about and remember, it feels like my brain will explode soon!
But on a brighter note, I'm getting an iPad Mini in a couple of days. My cellphone service provider called me yesterday and offered a good deal on an iPad Mini with 15GB surf each month at a good price, so I went with it! I have an old iPad 2 from 2011 but it's so heavy to hold I rarely use it, plus the mobile broadband I have on it, while no monthly fee, there's a daily fee for when I do use 3G on it so I rarely ever use anything else than wifi on it. I think the iPad Mini will be great, much lighter both due to size and it being newer, and with the internet plan on it, I won't need to think about when to use it away from wifi, I can surf as much as I like, wherever I like and I have a feeling I'll be using that iPad a lot and bring it with me very much! Really looking forward to its arrival! Hoping it will arrive already before the weekend!
Now I need to try to sleep, I'm still in ridiculous amount of pain, but the tiredness is getting overwhelming. I just wish this pain would ease just a little at least, or at the very least, not feel this goddamn bruised!
Tuesday, April 7, 2015
Random music thoughts
I have decided that I need more music in my life, not just by listening to music but to actually play an instrument myself again. I have a rather big keyboard and a violin, the violin is terribly out of tune though, and the keyboard is quite bulky, it really needs to be on its stand when playing but then it takes too much space so I tend to keep it on my lap which is pretty painful, plus some of its keys are weird, don't know why.
Anyways, I can probably tune my violin if I want to, but I'm not too sure about my neck agreeing with playing violin these days. So I've decided that I'm going to try guitar instead! I'm going to buy an acoustic guitar and try to learn some on my own with the help of YouTube tutorials and by listening to my favorite music. If Freddie and the others in Queen could learn their instruments on their own and on top of it write the most epic music ever written, then I should be able to at almost 30, learn to play some! My overly hypermobile hands may even be a benefit for playing since I can reach pretty far between one finger and the other, something that was an advantage already in my violin days well over 10 years ago. I took lessons between August 1996 and April 2002 so yeah, it's quite a long time ago now!
To start with, I'll just buy a really cheap guitar, no use spending a lot of money on something I don't know if I'll like or can manage. But should I end up having any talent I may consider buying something better then.
I've pretty much settled with going with a steel string acoustic guitar after asking around and trying to research some about the different options.
To me, music is so much more than just music, it's a way for me to manage my pain as I can hopefully numb the pain some by focusing on the music I listen to at the time. I'm hoping that playing guitar will keep my brain busy as well.
Anyways, I can probably tune my violin if I want to, but I'm not too sure about my neck agreeing with playing violin these days. So I've decided that I'm going to try guitar instead! I'm going to buy an acoustic guitar and try to learn some on my own with the help of YouTube tutorials and by listening to my favorite music. If Freddie and the others in Queen could learn their instruments on their own and on top of it write the most epic music ever written, then I should be able to at almost 30, learn to play some! My overly hypermobile hands may even be a benefit for playing since I can reach pretty far between one finger and the other, something that was an advantage already in my violin days well over 10 years ago. I took lessons between August 1996 and April 2002 so yeah, it's quite a long time ago now!
To start with, I'll just buy a really cheap guitar, no use spending a lot of money on something I don't know if I'll like or can manage. But should I end up having any talent I may consider buying something better then.
I've pretty much settled with going with a steel string acoustic guitar after asking around and trying to research some about the different options.
To me, music is so much more than just music, it's a way for me to manage my pain as I can hopefully numb the pain some by focusing on the music I listen to at the time. I'm hoping that playing guitar will keep my brain busy as well.
Friday, April 3, 2015
Annoyed...
I've been mostly bedridden for the past week now due to bad breakthrough pain and fatigue, most likely for having overdone it for a long time lately. I should be asleep by now, it's already 4:30am as I'm typing this, but there's just too much going through my mind right now.
I'm bothered by a fair bit of things at the moment, not just my body acting up even though that certainly is the most annoying right now as it greatly limits me more than I'd like.
But the other, non physical things then...
I'm royally pissed off with the Swedish Ehlers-Danlos Syndrome organization! They have been around for 22 years now and in all those years, they've not gotten much done at all, and they still go around spreading misinformation on their medical ID cards by writing certain issues as if they apply to everyone with Ehlers-Danlos Syndrome, instead of writing it as something that may be the case for someone living with the syndrome. By writing it the way it is, people who do not have that particular issue may be questioned whether or not he or she has Ehlers-Danlos Syndrome, even though the individual has the diagnose. The most annoying bit is that the organization has on the cards that the skin is elastic and tears more easily, instead of saying skin MAY BE elastic and tear more easily.
By writing is, individuals who have very little or no skin elasticity may be questioned, and it happens all the time anyways. Even people who are diagnosed by a geneticist may get questioned by a GP, just because. Elastic skin isn't even a formal criteria for diagnose any longer, it's just mentioned as something you may find in individuals with Ehlers-Danlos Syndrome. What we do have though, is some kind of skin involvement, just not always elastic.
My skin is only mildly elastic, it's to the point where I wasn't even diagnosed by a clinic in Denmark who only cared about the skin elasticity despite me having all the major and many minor criteria for Ehlers-Danlos Syndrome. I know I'm not the only one who wasn't diagnosed there though, and I'm far from the only one who wasn't diagnosed sooner, just because of doctors caring too much about the skin being elastic or not.
My skin is velvety smooth, mildly elastic and with some abnormal scars and striae, people who know me in person even say I'd probably fit into Classical type EDS, but truth to be told, my exact type hasn't been determined, we just know I do not have Vascular EDS. My official diagnosis is Hypermobility type, but that's like the standard you get if they don't know how to determine type. I'm guessing I may be Hypermobility with classical crossover though. Maybe one day I'll have proper answers on that, but for now, I don't really care as I do have the diagnose confirmed by two different doctors and before that, strongly suspected by another.
It just does bother me though, that the Swedish Ehlers-Danlos organization seem to not give a damn about people who have little or no skin elasticity and when you suggest improvements or changes to them, you may as well talk to the wall. I'm not a member of the organization even, I've heard too much negative experiences from members and former members, so why would I join an organization like that? They have too many people who have been on the board for the organization for too long but refuses to step down, they don't want improvement apparently. So fuck them!
A good friend and I will make our own medical ID cards instead, that has the proper information on them.
I know that people having such a card already has the diagnose and the card isn't intended as a tool to diagnose people, but the fact remains that you are questioned all the time regardless of which doctor has diagnosed you. So having information written by the old criteria, may be dangerous for individuals who don't meet that one criteria which most doctors tend to feel the most fascinated with- they always want to pull your skin to see how stretchy it is or isn't!
So yeah, royally pissed! And it's kinda hard to type at the moment so I don't know how much of this even makes sense. I'm tired and in pain... Now I shall try to catch some sleep!
Monday, March 30, 2015
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.
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!
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!
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