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30-3-2014
STRENGTH ….. There´s no perseverance without tons of strength but there can be strength without perseverance. I´ve seen that most when people are nearing the end of their life. Perseverance fades like the light at dusk but a person´s strength still glows on their face and can radiate until their last breath. Where do you find strength as your world gets smaller?

Being disabled has its own trials and tribulations. To me it also meant having to deal with a lot of psychical and mental abuse throughout my whole life, taking its toll on my strength.
Many people have asked me why I´m always happy, almost never sad. They work professionally with handicapped people and my strength is apparently very noticeable. I´ve been told countless stories of depression, suicide, alcoholism, drugs abuse and other forms of self-torment which disabled people suffer from. How do I explain where I draw my strength from? To learn about my given strength I´ve had to take a look back at my past.
From an early age on I had regular health issues, mostly severe infections. I was only 5 years old when a massive infection turned into sepsis and kept me in isolation at the hospital for months. Just a year later I nearly died of a breathing attack. Ten years later this was diagnosed as a rare, severe and life threatening condition. Nurses quickly noticed my uplifting spirit. Despite being so sick myself I was doing weird things on my bed to make a constantly crying toddler laugh who suffered from a bad skin disease. That´s after a nurse sternly forbad me to set one step on the floor. I was initially making faces in the window between our rooms. Hospital staff labeled me the sunshine of the ward which was not always helpful in getting properly diagnosed because the severity of my issues was overlooked.
Missing school was always explained to the other school kids, by their parents, as me being school sick. Parents would confront me loudly, for all the young kids to hear, about being school sick when I returned back to school. It didn´t help that I was top of the class within weeks after returning to school.
When I was 12 years old a huge medical error was made. I received a quadruple overdose of toxic medication which continued for over 2 years before it was detected. As a young teen I became completely bed ridden and the sole spark in my life were 2 little fish swimming happily in their tank. I was so sick that I have no memory of those years. I lived in a big bubble hearing people standing right next to me very far away.
Only a few years later my wheelchair was taken away from me during a hospital stay. I was forced to crawl through the hospital for days when I finally collapsed from the pain. They left me without any medical attention. Late at night my mom had to come save me. She has always been the main force fighting for my existence. One day she came home livid. One of the mothers had told her that if I would have been her daughter she would have locked me up in some facility a long time ago, just to be rid of me and have a life. Mom has always said she didn´t put me in this world to desert me and she never has.
Usually mom was on her own having to deal with this sort of shit since dad was never home during the week because of his job. She got a brutal house call by several teachers. It was during my early teens when my generalized dystonia (muscle disease) had progressed enough to cause trouble walking and severe attacks when I did too much. Mom was told she was the cause of all my health issues because she was a bad mother who made me sick. It would take another 25 years before this rare disease was finally diagnosed after many more doctor´s errors.
I´m still regularly confronted with the same kind of uncaring or flat out disgusting forms of human behavior. There are people who feel being disabled is something I should be ashamed of. I should hide from the world and not be seen or heard of. Loving nature documentaries I learned part of this behavior actually comes natural to predators. Leopards will kill and eat their injured fellow species. Being top predator humans, true to nature, take pleasure in killing of the weaker. People judge (un)knowingly based on various triggers such as skin color, race, religion and disability. Killing me takes many shapes from totally disregarding me as a human being to outright aggression. I love living in a small village because society doesn´t seem to harden quite as progressive and aggressive as it does in the cities. Attacking disabled people seems to have become some sort of sport nowadays. These are the things that eat at your strength and they are not always easy to avoid or escape. Some people can take away your whole spirit until you´re an empty shell.

While part of the human species evolve to selfishness and indifference there are also others who make your spirit and strength soar. One touching moment of somebody finally understanding what disability truly means I will never forget. My grandfather was a man of few words. At the end of his life he suffered several small strokes which caused him to have increasing walking issues. One day he got very emotional, with tears in his eyes he told me he finally understood what I was going through and how strong he thought I was.
I am very aware of my innate strength and part of it comes easy to me. Something as simple as spotting a butterfly dancing in a warm summer breeze can lift my whole day. I thoroughly enjoy cuddling our horses and other critters that walk through life with me. I simply enjoy the simple things in life. However I also have to work at maintaining my strength by searching for happiness, especially when things are at its worst. Strength is like a sponge that needs to get soaking wet regularly to keep a long lifespan. I learned to look at myself not as disabled but differently abled. My eyes are always open and I notice other people´s life path, sometimes at my self´s cost. I feel knowing myself more deeply has been instrumental to being a strong person. The risk, especially due to pain, lies in being too involved in yourself while forgetting the world on the outside. Despite being differently abled I´ve counted my blessings thousands of times. Even abled people, who seem to have everything they could wish for, can be much more miserable as me.
Where to find that happiness that gives me strength? I`ve loved music, dancing and (old) movies from my earliest memories on. I´ve had my music phase but I had to stop going to concerts because my spine would work as a sounding board irritating my muscle disease with every cord. Often staying irritated for a good 2 months after. Since then movies have become the main fun in my life.
Suddenly one morning I got up out of bed and my legs gave way. I hit the wall and from that moment on all my muscles were raging a full on war against me. I spend the next 5 years crawling through my house. Still not being diagnosed with generalized dystonia all aid was refused to me. I got home care but no wheelchair, none of the available aid to live a normal life, no assistance to be able to go out ….. nothing. One homecare worker after another broke down on my couch being unable to mentally deal with my fight to get recognition. They came and went while I sat behind my window watching other disabled people zoom by in their electric wheelchair. An upset worker came in telling me about hundreds of bikes being delivered to a center nearby so people could go out. My days were reduced to crawling downstairs in the morning. Crawling upstairs at night was a few hours long mental and physical battle drenched with lots of tears. Nobody knew what caused my symptoms so it naturally had to be a mental issue. A nasty stigma many people with rare diseases end up fighting for years.
This tunnel vision view in the medical world has always amazed me. It makes the struggle people with rare diseases go through often many years longer, while there´s usually emotional damage due to the delay and lack of help when people need it the most. Yet it´s the common denominator in stories of people suffering from rare diseases. In my case it was no different. Being locked up in my house for 6 years is the same time a Dutch murderer would spend in prison, except without the constant human contact they have while in jail. Nobody woke me up in the morning, nobody brought me meals. It was a long bureaucratic and legal battle. After I finally got my diagnosis it took the bureaucrats yet another year to get me the much needed wheelchairs. Apologies are non-existent and you’re left with the mental damage of spending years in isolation and utter torment.
Peter Jackson´s Lord of the Rings and the Hobbit movies have come to me at particularly dark moments in my life and their impact has been huge.
The Fellowship of the Ring was my first large step out of my house, out of my small prison. To me it was like climbing Mount Everest. Going out in my new wheelchair, being able to talk to people was not easy after 6 years of confinement. People who are faced with me in my wheelchair show all kinds of behavior, some of which unpleasant. Not at all helpful when you are struggling with yourself. Every wheelie remembers that first time they went out in their wheelchair. It´s a big mental threshold you have to cross. Some never make it across that threshold.
There´s people you come upon with the flee factor. The moment they see you coming their eyes show panic and they do everything to escape having to talk to me. Jump chairs, focus on a highly interesting spot in the ceiling, run into street lamps, whatever it takes to avoid eye contact and God forbid me talking to them.
Then there´s people with the coochie coo factor. They talk to me as if I´m a small child or pet me as if I´m their dog. They usually won´t stop talking and pretty much force their help on me. I flee those people asap. However kind they mean to be it usually backfires because it forces me to lower myself to a level I don´t want to be on.
Thankfully there´s also the normal factor. It´s always a sigh of relief when people look you in the eye and don´t look down at your wheelchair. People who see you as a person instead of a disability.
Times change and wheelies have become more normal in everyday life. Yet people still get uncomfortable around me. I don´t mind if they get nervous as long as they treat me like a human being.
...................................................... to be continued


24-3-2014
My body is still struggling recovering from the massive infection and again it´s unclear what it was. I´m still pretty sick from the bad side effects I had from all the heavy medication. Meanwhile I had to travel all the way to Amsterdam again and the verdict is in. Tests show this pesky new disease did create the dreaded rare complication in my case …..…. oh how I love always getting the nasty exception …... NOT!! There´s an alien mass pushing against my intestines. It´s already too close to be removed with an easy shaving technique. My intestines would get damaged. The only option is expensive surgery and the effects for me would be massive because a too large critical part of my intestines would have to be removed. I would be wearing diapers the rest of my life. I will have to learn to live with this new pain, next to the pain my generalized dystonia blesses me with regularly. They have a little room with more chemical pills to try and make things easier when things get worse. I will have to eat very light meals and no more meat. When life gives you lemons ………… wait a second. Ice-cream turns to water when it melts so it´s light enough to pass my alien wheeeeeeeeeeeeeeee


27-2-2014
I started this blog last year after having increasing attacks where I simply stopped breathing. Scary as hell and it renders you totally helpless when you live alone. I´ve had them before but this time it was for some reason much worse. Emergencies, ambulances and hospitals suddenly crept back into my life full force. As I mentioned before I suffer from a rare condition named generalized dystonia. Nobody ever has a clue at the local hospital and basically they go "huh what, I´ve never heard of it". They then try to treat the symptoms while being almost in the dark. It´s like letting the car enthusiast paper boy fix your Bentley which won´t start.
After many years of suffering our health care system I know hospitals and doctors can only do so much. In fact it´s a global problem when you´re dealing with a rare condition. I´m very aware there are many patients who suffered the difficult road to diagnosing a rare disease. Our stories are too often similar descriptions of a very difficult time in our lives. I could write a book about the inconsiderate, stoic or even cruel and abusing specialists I´ve had to deal with before I got the diagnosis generalized dystonia.
Lying in the hospital trying to answer the same questions from worried friends over and over again is exhausting so why not blog: inform your friends and leave something behind for fellow patients as an inspiration. Due to one of my other rare conditions I have nearly died quite a few times and felt my time was ending. Something was wrong but I didn´t know what.
grumpy cat

They say when life gives you lemons make lemonade
Well when you drink too much lemonade you turn into a SOUR PUSS!
PERSEVERANCE ……… luckily I´ve always had it in spades. Without it I would have been one big mess the last half year of 2013. A very important character trait to have when dealing with doctors. I´ve met many incompetent doctors, not capable of fixing anything. Absolutely useless helping me struggle through life, often arrogant and undeserving to their title. I´ve been through too much to look up to them, like so many patients seem to do. They sadly take prescribed treatments as gospel without thinking twice about it. There are many doctors but only few have that very unique talent which makes them special. Their level of care and genuine effort to help me raised them above the general medical level. I consider myself lucky having met a few in my life. Despite it often taking considerable effort on my part, or my mom´s when I was a child, to even get the mandatory referral to them. I´ve learned to listen and trust my body, before I trust a doctor´s judgment of me. Hopefully my stories will elaborate why every patient should take his/her own responsibility about their health.

Little did we know that there was another underlying rare condition that was about to rear its ugly head and causing all my breathing problems early 2013. The large surprise alien in my belly turned out to be something completely different during surgery. Initially diagnosed as a cancer threat the alien turned out to be another disease …… as if I don´t already have enough to deal with. “You´ve been very sick from it for a long time”. Somehow I never noticed anything until the massive infection in May 2013. My body can apparently trick me into thinking that I´m fine when I´m not. That was the new lesson for me to learn. Maybe pushing myself to live life to the fullest can be toned down ….. well just a little bit. It´s my spirit, my heart and it shouldn´t be broken.

I´ve been struggling with my eyes for 2-3 years. Somehow everything is always swimming and in motion so I can´t watch tv properly. I have a wonderful home physician but due to new laws she had to have more doctors in her practice. One of them, a woman, is the crappiest doctor I´ve ever met and of course I always have the luck to end up with her during an emergency, on the odd hours she works. The alien could have been noticed a year earlier if she had bothered to examine me when I had severe indigestion. Instead she told me not to worry and go on a holiday. In fact she has never ever examined or treated me for anything. She just talks and sends me away with absolutely nothing. For my eye problems she sent me to the spectacles store .... of course they love to sell new glasses but the "specialist" there had no clue what was wrong with my eyes, while she made my wallet a lot lighter. After decades of fighting incompetent doctors I know better but even I get tired and think ah screw them, not today. I didn´t follow up when she sent me away and I should have. After the surgery I finally got a referral to the eye specialist at the hospital. I managed to get the best one. Within minutes the eye specialist knew what was wrong with my eyes. Due to the dystonia my eyeballs are being pulled to the side too much. I see double but I could not tell him where I see the shadows. I finally discovered it´s best to focus on a tree with a bright blue sky in the background. I immediately saw 2 shadows, left and right. I can see perfectly clear when I look up. When life gives you lemons ..... I can watch tv lying on the ground looking up. Maybe I should get a 3D tv!!!!
Part of my treatment after the surgery was talking me into a simple procedure to limit the chance of new aliens mucking about in my belly. I did my research of the options prior to it, including interviewing several doctors about it, but all options have small risks as usual. Little did I know that my least risk choice would become another “very rare complication” that the medical world is often so bad at spotting early on.

I soon developed belly aches which quickly rose to the level of “I want to throw myself in front of a train” excruciating pain. Nothing was working. The pain even would go right through my heavy painkillers which itself can cause internal bleeding. The good specialist who had operated on me had managed to keep the surgery limited to 3 little holes, despite being faced with a surprise worst case scenario, because she knew that would make recovery so much easier on me. She not only faced a different alien than expected but it had also firmly latched on to my intestines and anything in the area it could grow into. It took lots of effort to peel it away.

The specialist who replaced her was clearly uncaring of my suffering. Not even offering me any pain medication to tide me over during the weeks and weeks of waiting until my next appointment. Not listening to my own deduction that all my problems started with the simple procedure. Ignoring the mystery infection I had less then a month after the procedure. I did more research and decided it was best to get a referral to a larger hospital with specialists experienced in my new complicated disease. In the Netherlands you need a doctor to write a referral or else you´re not allowed to go anywhere else and the insurance company won´t cover it. Except the specialist would not play ball and neither did the other specialist I was sent to. They not only insisted they could handle it themselves, now they decided to make me a ping pong ball again. Each one telling me my condition was not on their field of expertise but lay with the other specialist before sending me away with nothing. Totally deserting me from any help and pain relief. In fact they should have both detected it because it was in both their fields of expertise. I stopped trusting any of their opinions. One of the exams just before the holidays revealed another surprise. They found pre-cancer cells. Oh goodie, now I´m on some type of cancer watch list, just in case. They also found an atypical inflammation aka they have no clue. They don´t know what it is but they know I don´t need treatment or anymore checkups. I stayed in limbo and had to fight for months and months to get that much desired doctor referral. I made my demand to get referred louder and louder as the incompetence became more clear.

When the nurse in charge of scheduling an appointment with the specialist I would be referred to asked me where I wanted to go I was extremely relieved. They refused to send me to the specialist I had chosen but her offer was sooooo much better. I recognized the hospital in Amsterdam she mentioned as having the best specialist for this disease in the Netherlands. I didn´t care that it couldn´t be further away and would require long trips. I managed to remember his name and gave it to her praying that she would manage to get an appointment. It´s always best to come prepared. These type of highly experienced specialists will not see everybody but only selected patients. She actually did succeed and then the long wait began. Another 2 months of pain before he could see me, which was actually very quick because his waiting list is at least 3 months long. Enough with the lemons already, I´m tired of all the lemonade!!!
The old experienced specialist, who will soon retire, was a breath of fresh air. Warm, kind and most of all he listened. He had the right balance of seriousness yet humor about my predicament. The referral letter they received from my local hospital made it clear to him. They were clueless, incompetent and had withheld me from ALL the medication there is to ease my suffering. The answer was staring them right in the face with the diagnosis of my newest disease and still they were blind. He immediately prescribed the right meds to tie me over during the examinations he wanted to see done. Yes more waiting, just what I didn´t need. He wanted the best doctors to do these tests because they were experienced in detecting the damage in my belly from this disease. The ultrasound was first and immediately confirmed my suspicions. I had several ultrasounds at my local hospital to check the simple procedure was done right and was repeatedly told everything was fine. That was far from the truth. It had gone horribly wrong and ended up deeply embedded in a muscle where it should have never been. The specialist appeared very worried and made it clear it had to be removed, probably during another surgery. The bad place it was in meant it would be too painful to fix without anesthetics.

I got the requested MRI and shortly after shit hit the fan. The reason I had to stop working on this blog entry is that after 7 months of excruciating pain and clear deterioration my body couldn´t take anymore. It has decided to try and fix itself by evicting the simple procedure that went totally wrong. I got a seriously bad infection in my belly 3 weeks before I will get the end results and I´m still fighting it. My brother had to come home from work to take care of our very seriously ill mom. Getting to Amsterdam all alone, with the highest fever I´ve ever had in my life, in a wobbling shaking taxi bus was 2,5 hours of absolute torture. I begged the doctor on call to keep me in the hospital and she finally gave the okay, after much discussion with my specialist behind closed doors. It took 3 doctors and several attempts to painfully reverse the procedure without having to do emergency surgery. Full anesthesia is very risky for me and only a last ditch option. Lots more antibiotics and a body that has taken a severe beating later things are finally looking a bit better. No more lemonade please, I want champagne, better yet a champagne bath!!!

I still don´t know the full damage this lack of medical treatment has done in the past 7 months. I can only hope and pray I do not have the worst case complications of this disease which can be very bad and require further surgery. Next to my generalized dystonia I will have to find out how I can keep my body in the best state possible. Again there seems to be a natural way. I spotted posters in the hospital about research being done for the effects of green tea. I already have some experience with the effects it has on my muscle disease which makes it easier to do some more experiments myself.

As I mentioned before mom has a severe and rare disease too which is why I´ve had to leave my house of 23 years to go back and live with her. She is the only one in the Netherlands who has it this bad. Despite all the knowledge we have gained over the years her road to the best Dutch specialist was longer than it should have been too. Doctors are stunned that between the two of us we share 4 very to extremely rare and complicated diseases. It´s not just finding the right specialist which is difficult. The Dutch health care system fights us every step towards getting the medical assistance and care we need. Mom has always been a tigress during my childhood. While growing up she always defended me as best as she could, getting me to every doctor she could find. This time I have to be the tigress and guard her health.

Doctor arrogance is abundant and no doctor will ever admit they don´t have a clue. Over the years I´ve learned how to spot doctors who don´t know what to do with me. Despite severe urgent issues they tell you to come back in 2-3 months. They make no eye contact and are quick about getting you out the door asap without actually helping you. Sometimes it´s best to treat them with velvet gloves and sometimes it´s all-out war to get referred. This time I had to go to war to get a referral. The moral of my story is that I went through the same shit for 25 years!!! before my generalized dystonia was discovered. I went through it again before mom´s very rare disease was discovered and now I´m going through it again. The road is always long and filled with incompetent doctors, unwilling to listen or help. They prefer to keep their own arrogant egos intact. It´s only the patient´s (or his/her family´s) perseverance that will get you to the right specialist. Never give up when you feel there´s something wrong with you and you´re not getting proper help!!!


16-1-2014
2014

Wishing everybody a healthy and happy New Year! This is the year of the Horse. Time for unexpected adventures and surprising romances. Travelling far away and off the beaten path. Sounds good, I love horses, adventures and travelling, bring it on.

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