Old Sailor on a mission

Dear Bloggers, 

The Old Sailor has become a man on a mission. Since his little girl was diagnosed with a behavior disorder at 8 years of age, together with his wife he has worked tirelessly to get our daughter the best possible intervention. Today we are getting help from some professionals.

You are making a difference just remember this: You are a parent, not a doctor or a scientist.

But, when it comes to your child, you are an expert. You know that little face and whether it lights up when you walk into a room. You know your child's babbling voice and would be the first to notice if it suddenly fell silent. You know how she behaves when she sees a new toy, meets a new child, goes to a birthday party, or visits a shopping mall. You know what makes her cry and what makes her laugh. You've seen children playing in parks and squabbling at family dinners. You've seen her as a baby playing peek-a-boo and playing house. And you wouldn't be a parent if you had not compared your child with other children.

Of course, not every difference is a disorder. Far from it. But if your instincts are telling you something is wrong, that something about your child is quite different from other children or that something essential about your child has changed or become increasingly troubling, your instincts are probably right.You know when something is wrong. Children with anger outburts have parents who are persistently worried about them. So, if you are worried about how your child is reacting and behaving, you should take your worry seriously. It could be a warning sign.Parents have been diagnosing their children from early on. They know it, they feel it. They say it all the time, "I just know something's just not right . . . the way she does this or the way she does that . . ." And they're right, usually.

Some parents whose children are eventually diagnosed with a disorder realize that their children were different as babies. A few notice specific, clear-cut problems; many others have nagging, vague concerns that are harder to express.Other parents see signs accumulate over time or appear suddenly. When doctors ask the right questions, worried parents almost always speak up. And, once their child is diagnosed with a problem, even those parents who do not express their worries at first usually say that they knew "something was wrong." Often they "just burst into tears" when their fears are confirmed.

Still, you may believe that what you know about your child pales in comparison to what seasoned pediatricians, family physicians, and nurse practitioners know about the science of development. If you've taken your child to every routine checkup and gotten a clean bill of health, you may feel that's reassurance enough. Unfortunately, that's not the case. While most health professionals do a good job of assessing physical development and try to measure cognitive growth, far too few know how to assess social and emotional development or how to interpret the early behavioral signs of disorders like for example autism. Some well-meaning doctors ask about these topics, but use the wrong questions. Others rely on their own, too-brief observations. And, unfortunately, far too few children with developmental delays and disorders get the early, intensive help that could put them on a healthier path.

The good news is that you can do something about this. You already know a lot about your child. You are about to learn a lot more about how to assess your child's social and emotional development and how to get prompt help if it's needed. 

The pediatricians take seriously their responsibility to follow a child's development. They are not annoyed or put on the defensive when parents, often armed with questions gleaned from a stack of books or the internet, want to talk about their children's social and emotional development. We were advised to see a specialized group pediatricians and caretakers that are taking tests in a playful way with your child and try to diagnose what the problem might be.
 
We eventually found this more knowledgeable pediatrician. And so can you. Ask other parents and your family physician for recommendations. When you hear of a good prospect, schedule a time to go in and talk with him or her, preferably without your child along. If you choose a practice and later become dissatisfied, try again. This process can be time-consuming, but will be well worthwhile, especially if your child has a problem with behavior. Ideally, you will find a pediatric practice where:

*developmental screening and observation are a routine part of every well-child visit.
*doctors get to know the children under their care. That means that your child usually sees the same physician or nurse practitioner, whether for sick or well visits.
*other staff members are accessible and helpful. Believe me, one helpful receptionist or nurse can make a huge difference should your child need complicated care.

It  all comes down to you. The truth remains that no matter how good your pediatrician is, you are your child's best observer and greatest champion. You are the gatekeeper, the person who stands between your child and the rest of the world, deciding which experiences and people to invite in and which to try to keep out. For parents of typically developing children, being a gatekeeper means choosing the best preschool or the most nurturing nanny. It might mean banning certain TV shows or toys. If that's your situation, you may have to work especially hard to get what your child needs.

For parents whose children turn out to have challenges, being a gatekeeper means all that and much more. It means choosing the people who can best help you and your child to navigate an often uncertain path toward the best possible outcome. It means working with those people to decide what is best for your child, but often making the final decisions yourself. It means becoming a true advocate.
Never forget, you are uniquely qualified. You know more, and care more, about your child than anyone else. All you require is a little more information and a few more skills. So, learn more about why it's so important to act on your concerns and then take action.
Your child is depending on you. 

The Old Sailor,

A shocking message

Dear Bloggers,

This week is the last week before the summer recess of the high schools so it was time to hand in the books for this year and in the evening hours I should bring her to school again for the final schoolparty. Just before we took off to school I got an e-mail from school reporting that one of the students had passed away in the weekend. The kids had to gather after returning the books to hear what had happened. I felt sorry for the parents who had lost their 15 year old daughter.................(I am not many times out of words but this made me silent.)

That means another family has lost a child on leukemia. And it pisses me off.  BUT… i am also glad that I am there, or was there so that it might be easier for her.

It must be horrable and mindblasting to hear, ” She has blasts in her blood.”  ugh.. what does that mean…and there is no time left to overtink it. “You’ll need to admit her immediately.”  ugh, do they mean now at this moment. After the first round at the hospital and the treatment with medication, seeing recovery coming.

Then to hear “She can go back to school if you’re comfortable with that.” Does this make sense?  NO.  None of it makes sense because they’ve just told you that your child has cancer.  WHAT!!!!   Not possible.

So we need Leukemia to come to a hold for all the parents of new leukemia patients out there.  We need a program where we can help newly diagnosed families and give them a bit more hope as their will be more money for research and maybe we could team them up with old jolly busters like me

.

Maybe there should be a person, not just a message board where they can connect and ask the questions that need to be asked.  Do I give certain medication before or after breakfast?  Not that we would be able to answer every question….. but it is sure nice and more human to have someone to ask.

Of course it isn’t just the message that has me up in arms about leukemia , it is a daughter, a family member and only 15 years of age. It could’ve been my girl or your kid or even a schoolfriend of our children.

That does sound harsh and yes this child is gone. But basically what it means to you is that another child was diagnosed with cancer. Leukemia, the 2 year treatment, cancer.  The one with the 95% survival rate at 5 years after diagnosis.  The one where the parents freak out.  Oh, wait, that is all cancer isn’t it.

The school party was cancelled and at school they made a memorial room for this girl, out of respect I am not mentioning names as it must be pretty tough to cope with this loss. My thoughts are with them and I can only send you love.

The Old Sailor,

The Pneumonia

Dear Bloggers,

Everyone's been sick from time to time, and by definition, it's never fun. No matter what you enjoy doing, illness invariably dampens -- or in many cases entirely eliminates -- the potential for good times. Of course, not all illnesses are created equal; some will interrupt your life a lot more than others, which is why I'm here today to tell you about my wife who had a recent bout of influenza that turned into full-blown pneumonia.

You Can Die From This. Yes, You Can.
Let's get the scary and dramatic part out of the way first. Anyone who gets pneumonia and either a) doesn't recognize what they have or b) chooses not to have it treated, can die. If you think that pneumonia can only kill the very young and very old, you're mostly right. However, if you don't seek treatment and follow your doctor's orders, you can be one of the people who have the prime of their life cut short unnecessarily. While medical science has come a long way, and conditions like pneumonia are very treatable in most cases, you need to take it seriously.

You Can't Fight What You Don't Know You Have
This is her second bout of pneumonia; the last one was about ten years ago, in April 2002. The first time she got it, I thought it was strange that the cold she had was seemingly getting worse and worse. She couldn't seem to shake it. She was also very fatigued, and would start running out of breath easily. Than I thought it is probably her asthma that is troubling her. Now I know better. The final straw that caused her to go into the doctor's office was a strange sound when she would take a deep breath. It sounded as if there was tissue paper in her chest that was crinkling, especially at the end of an exhalation. It also hurt quite a bit when she needed to cough. She did not, by the way, have a high fever that time, nor was she coughing up stuff. But the breathing sounds and the pains were pretty disturbing.

Diagnosing and Treating Pneumonia
The medical people are pretty good at diagnosing pneumonia these days. First they check your usual vital signs. Then they use a stethoscope and listen to your chest while you breathe.First of all they will give you a treatment with some antibiotics and you should be back on your feet in a week. If not you should go and see  the doctor again. If it seems to be a bacterial pneumonia which is likely, they give you a chest x-ray. Pneumonia is easy to see; there will be an area of the x-ray of your lungs that shows the infection.

In this case, She'd acquired influenza type a (aka, the flu) probably from a co worker a few days earlier. (Most likely scenario.) When you get the flu, one of the problems (in addition to the miserable fever and aching body) is that your immune system goes to hell, leaving you susceptible to other problems. This time, Lucky her, she was familiar with the sensation of pneumonia, so I called the Doctor for some advise as she was colouring blue in the face and her hands were pale, and begrudgingly we went to our local on duty MD on Monday evening. Everything seemed pretty good until they checked her O2 level, which was at 99%. That's strange and a lot better than I expected to see. The Doc laughed a bit and had his doubts about the pneumonia. But the bigger sign was when she started coughing... and dropped nearly to the ground in pain. So we were send of to the Hospital to get an x-ray to be made and to take some blood samples.
Despite the fact that her influenza was viral-based, the pneumonia is a separate disease that's a bacterial infection, and has to be treated with strong antibiotics. The first line of attack was an cure of humangous tablets Claritromycin. Side note: these tablets are so hard to swallow if you hardly can breath and they taste awful so it made her throwing up.... at first. Later on, it may feel like someone kicked you in the mouth while wearing steel-toed boots, though. The antibiotic parade kept marching; The Doctor was concerned about the pneumonia enough to treat it more aggressively, which is why he prescribed two different antibiotics after that. I have been taking both Prednisolon and Ciprofloxacin, and just a few days later, this onslaught of bug killers seem to be working well.

The Cure Hurts Too
While she appreciates the need to go in and clean house, so to speak, in her lungs, the problem with antibiotics (especially multiple strong ones as she is on) is that they tend not to discriminate in terms of which bacteria they kill. It's like going after a terrorist cell by setting off an atomic bomb; there's going to be some collateral damage. The downside of these antibiotics that it is also draining your condition level you feel like an old woman that has ran a half marathon without any form of practise. Out of breath and feeling like been ran over by a bus. Inside her lungs it probably looks like the aftermath of the bombardment on the city of Rotterdam during the Second World War. Or when the tropical storm Katrina left a trail of dubree. Everything that survived this big blow is standing but is it still strong enough for a second blow. So, all of the "good bacteria" that lives in your gut will also be eliminated, and you'll likely find that your ability to digest food is immediately gone.

It's Probably Going To Be Okay
The fact is that if you're older than 6 and younger than 65, you will probably be just fine after getting your pneumonia treated. One of the most difficult aspects of it for me has been keeping my optimism level high. Pneumonia tends to sap all of your energy, and it's easy to forget that things look a lot brighter when you have your health. In the practical matter it means that I have to fix all the work in the house, now my wife is ill not very good when you need to do a full time job and having trouble to divide my own power. You just need to trust the idea that as she defeats the bacteria in her lungs, her energy and attitude will eventually come around as well. And no I'm not the most patient person in the world, so this part is particularly difficult for me. However, I have too damn many things I want to do yet... more music, more films, more web sites, more family activities, more travel, more new experiences, more good times with friends, and more fun... that I know this mopiness is just a temporary side effect that will, soon enough, be gone. But at this moment we are like an old and sick couple that is tired and wants to sleep all day.

I'm looking forward to time she is getting better and I am getting back to my usual silly self. And I will.

The Old Sailor,

On the way of finding peace within

Dear Bloggers,


This week I went to a fysiotherapist that is booking good results with learning fibromyalgia patients a different way of live and an other way of breathing. The so called breathing from within. I have trouble to believe in these kind of health guru’s but this time this rather normal looking therapist got my attention and told me a few things that could be right. As I am believer of practising breathing techniques from the Chi that I learned during my army days. (nearly 100 years ago, when ships were still made of wood.) These are still basic needs for a guy like me that starts every morning with pain but does not want to complain. Time to find peace within yourself.

Every person has a fibromyalgia thermometer

Knowing how to find peace in your life doesn’t need to be difficult, in fact if we can simply align ourselves with the present moment and enjoy what we do, then peace is sure to follow. This sounds easier than it is. The reality is that our minds have a way of always desiring new things and always getting lost in negative thinking patterns whether they be of the past or future. There is also the nature of desiring fulfilment in some future moment, external achievement or outcome. By desiring to achieve something externally we create and inner imbalance. Instead wouldn’t it be better to focus our energy on attaining inner peace and happiness which is what creates a blissful life? This is not to say that we should give up on our dreams, but instead to create balance within, so we can truly realise our dreams. If we can shake off those negative thinking patterns and align our energy with what we truly want in life, then soon enough our dreams will become reality.

In order to create balance in this area of your life, you have to use the energy of your thoughts to harmonize with what you desire. Your mental energy attracts what you think about. Thoughts that pay homage to frustration will attract frustration. When you say or think anything resembling There’s nothing I can do; my life has spun out of control, and I’m trapped, that’s what you’ll attract—that is, resistance to your highest desires! Every thought of frustration is like purchasing a ticket for more frustration. Every thought that agrees that you’re stuck is asking the Universe to send you even more of that glue to keep you stuck. This video shows to me even if you are poor you can do something positive for others. Playing for Change does explain that we can also bring peace through music and enrich our live in a different way.

The single most important tool to being in balance is knowing that you and you alone are responsible for the imbalance between what you dream your life is meant to be, and the daily habits that drain life from that dream. You can create a new alignment with your mental energy and instruct the Universe to send opportunities to correct this imbalance. When you do so, you discover that while the world of reality has its limits, the world of your imagination is without boundaries. Out of this boundless imagination comes the seedling of a reality that’s been crying out to be restored to a balanced environment.

Restoring The Balance - The objective of this principle is to create a balance between dreams and habits. The least complicated way to begin is to recognize the signs of habitual ways of being, and then learn to shift your thinking to being in balance with your dreams. So what are your dreams? What is it that lives within you that’s never gone away? What inner night-light continues to glow, even if it’s only a glimmer, in your thoughts and dreams? Whatever it is, however absurd it may seem to others, if you want to restore the balance between your dreams and your habits, you need to make a shift in the energy that you’re contributing to your dreams. If you’re out of balance, it’s primarily because you’ve energetically allowed your habits to define your life. Those habits, and the consequences thereof, are the result of the energy you’ve given them.” -Excerpt from Being In Balance by Dr Wayne Dyer

And that is exactly what is wrong in my case. So it is time to turn the world upside down and inside out. There are only a few that can do all this on their own. Time to turn this energy switch and run on a smoother pattern.

To truly understand how to find peace in your life, you need to experience the beauty of stepping our of your negative habits or thinking patterns and enjoy the potential and bliss of the present moment. A great way to experience this is through meditation, yoga or practicing a new way of breathing and being completely present for a moment or two each day.

The Old Sailor,

Did I fail in this life?

Dear Bloggers,


This week I have been transfered again to my old station and had to pick up on my knowledge again. In a way I feel happy on the other hand reality is that they could not find anyone else. I have at this moment the feeling that the things that happened in my life so far have only brought me more and more worries about the future. How do you know if your life is a failure or a success? Many queries are bubbling up in my brain, it is busy in there it’s like a real autmn storm in my little grey area.

Or, maybe instead, how do you know if your life is a success?

What are the criteria? Who gets to decide? Is your life a failure if you are send to prison? If your kids go to prison? Are you a failure if you don’t do what you want to do for a living? If you don’t do what are you supposed to do for a career? Or if you made once a mistake do you get the blame forever? Unless you are being protected by people on higher positions you might have a chance to make some mistakes.

When is it too late to fix it?

Considering that a life includes many stages and levels, maybe the answer is always subject to qualifications and/or temporary current circumstances. Maybe a person can always make amends and change. Or, maybe it is part of the human condition that we are always just a few degrees away from either success or failure…and the decisions we are always making are constantly swinging the pendulum back and forth.

The person that goes to prison can reform. The person responsible for a drunk driving accident can make amends. The person commiting adultery can quit. The person engaging in destructive behaviour towards other people can stop. It is a kind of nature that we are like wolves, if there is no strong pack leader the other ones might tear you apart.

Or, maybe they cannot?

Maybe the criteria are locked and fixed. Maybe the hands of fate don’t allow for a second and third chance. Maybe our flaws are too many to overcome. Maybe even those with apparent success are hiding significant faults.

Is it only at death that we are judged as good or bad, success or failure?

Decisions made years ago, and early in life, have a bearing on incidents that happen later in life. No one is ever truly able to escape their past. Decisions made at one point with the confidence of correctness can later be determined as incorrect. Time marches on. Nothing is ever over. Does this knowledge force us into a state of intellectual paralysis?

Does enlightenment occur from the knowledge of this pendulum of good versus evil and success versus failure? Maybe those that are aware of the precarious balance are thus successful as a result, while those who are oblivious are failing…will fail…can’t stop from failing.

You need to set some goals in this life. Altruism, kindness, generosity…those are universally recognizable and realistic goals. Those are goals that benefit both the individual and society as a whole. Pursuit and realization of those goals should probably allow a person to be considered as successful.

Failing to follow those guiding principles…well, failure is as failure does.

So, are we feeling sorry for those that don’t get it? Can we help those that choose to make mistakes? Can we look the other way while they fail? And, are we then also failures as long as there are those without the knowledge of this path to enlightenment…those who fail to see it…those who fail to do what is right…those who just fail? It’s a philosophical thing that keeps my mind running.

“You can lead a horse to water, but you can’t make it drink.”

My thoughts might sound kind of negative somekind of dark and people may call me a doomthinker. I really wander how can I change things into better prospectives? I feel that I have failed on many things in my life. It has been a long time ago that i felt successful.

On the other hand i did do in a way quite well. But who am I kidding actually as the last few years everything went downwards. When I had to stop sailing my income fell with more than 40% in a year, I got a body to live in that only works on half power and is painful every day. Yes I became trapped in my future plans and there is no light that guides me to the end of the tunnel. Now I am renting myself out to get my hours filled as the holiday season is coming. For crying out loud no one cares about you or your feelings.

“It is no use lying to one’s self.”

I have trouble to stay positive in this jungle of emotions. Must I just stay positive when everything in life turns you down? I live in a house that is hardly sellable, a job with an uncertain future, I drive an old car which I cannot replace due to less and less work. My family suffers from it as well and everyone has it’s own needs. Are we slowly going our own way and what happened to the unity?

Honesty and the right action determines success…regardless of the endeavour…anything and everything short of that is failure.

The Old Sailor,

The day that I nearly lost everything.

Dear Bloggers,

So here's the scenario. About a year ago I was diagnosed with Fibromyalgia and I did get the the Talk. The doctor in question gives a lot of these talks, and is determined that we shouldn't miss a single word. We are shown a figure with red dots for the trigger points, and she begins to describe what's happened, in mind-numbing detail. I mention that I'm a guy that learned some Latin and Medical terms had my interrest for a long time, and I knew about Rheumatic problems already quite a few things as I have been strawling through medical books and of course on the internet. We have to listen. To all of it. She is, she tells us, the expert, and no-one for miles around knows as much about Rheuma as she does (My doc at home does probably know nothing at all at least I share that opinion).

I kind of loose my temper a bit as I realize that I am stuck on this bloody sickness for the rest of my days, The doc ignores me and disappears for a short while. We might need her again in the future whispers my wife and I am ashamed of myself. Due to the fact that there will be not much progress in the coming year, I will definately lose my job and have less income. My boss is giving me notice and I can sense that this is difficult for both of us. I had so much fun doing this job but my body decided in a hard way that this was not going o work any longer. I hated myself for quite a while and had to get my feet back on the ground and suite myself with a new style of living. A slower and more balanced life would do myself good. I will compare to someone that is stuck in a body of an eighty years old man who has been working hard all his live but now his worn out body is holding him back due to pain all over. Accepting it is not that easy, the pain is something you learn to live with. My wife told me one day that no one is getting happier when I am complaining, I guess that she was right so I stopped doing that.

The doctor returns, I apologise very nicely (as I have been instructed by my wife), and we proceed. We are told again that we need to come back for some more tests on Monday. We are given some booklets to read ourselves and that was it. Totally devistated we leave the doctors room. All of a sudden some horrific pictures of the worst case scenario run through my brain (a man like me with what looks like a wheelchair and his head is hanging down on his chest; I'm still not sure what that was supposed to be).

In the time being at home, I worked myself back up to certain level and got back to work. I started a job to become a bus driver on a commuters bus for the summer season. If it would not work out with my body and brain, I could simply pull the plug as I am hired through a temps office. In the beginning it was hell as I had to stick a lot of information into my brain which was still foggy due to the amount of medication that I have been using to settle the pain level. I look at it as a drug user that becomes clean, that also takes a couple of weeks before the brain is clear again. 

The money is coming back in although the amount is lower and deducted from my dole money of course. Our holiday? we can simply skip as I am hired for the summer season. Again I feel tears burning as I cannot spend money on my loved ones. That's ok, says she and my kids are fine with it, I still feel like that I am failing somehow. We cannot go on our holiday, maybe next year. Whe sat down one evening when I was still home, we decided to sell this beautiful house and buy something a bit smaller as cleaning and doing the garden became to much for me and for my wife it is too much too handle on her own. Certainly we like to get a reasonable price for it, but still it is not been sold. But what about the housing market after the recession banks do not dare to take any risks anymore. In the mean time we are still living here and although the garden is getting more and more a mess. I mow the lawn and my eldest daughter is helping me with it. The rest of the garden is not in a great condition. Ah, That's ok, because we can sell it for abit less and move on. Hmmm......sounds like my wife gave up on it too. We have seen a nice house on internet with enough space for all of us and with a suitable garden. We would get on a lower mortgage and we could save a few euros to go out for a long weekend. That would be at least long enough for me. 

Well, at least we can sit at home and read... 

The Old Sailor,

Do you believe there is a God?

Dear Bloggers,

This morning I woke up at five and had a sad kind of feeling over me. My thoughts wandered of again to my younger days. I do not have that many memories left after my accident unless the memories had a very deep impact on my live. But first of all let me do some introducion on the story. This story goes back more than 20 years. My dad had a stable with ponys and those were for rent as it was his hobby many guys and girls helped on a volunteerly base to get the stable going and keep the prices affordable for everyone. Carolien was one of them and she was a good looking young girl who lived during the holidays on a campsite with her family. She had a lot of headaches during the summer period but no one came to the conclusion that there was something wrong inside as she was a happy and cheerful girl. What a shame that she was ripped out of our lives and my God what have these parents gone through.

 My daughter is slowly climbing up to the time of adolescence and it reminds me of these days that I was struggling with hormones, emotions and all other interests in the other sex. But deep inside I was too shy to get involved with these girls. I am not a Don Juan and that was what God had forbidden. I was brought up with religion and I had to go to church during my youth. I stopped believing after one of my dearest friends was killed by a brain tumor and our dear God did nothing to save her. God killed my friend or at the very least stood by doing nothing while she died, while allowing people like surgeon’s who did not recognize this to live on with no regrets.

My friend, we’ll call her Carolien, died this past weekend at the age of 14. She was diagnosed having a severe headache problem but no one thought that it would be a brain tumor, and she could have had every type of surgery, radiation, and chemotherapy possible at that time, but no one came to the idea that she would have a brain tumor. When she collapsed at the volleybal training they rushed her into the operating theatre and tried to remove the tumor or at least to make it smaller. It was to far grown to remove it and it was not good enough to save her. She was sweet, caring, beautiful, and strong; she had recently gotten into high school and had a lifetime worth of goals and dreams ahead of her. Carolien had made plans for her future, and eventually becoming a mother. She volunteered in her community and was kind to everyone she met, regardless of whether she personally liked them. She was active in her church, sharing her many talents with anyone who asked.

Let me now add a disclaimer that I don’t believe in a God – there are a lot of things we don’t understand about the universe, and I don’t pretend to have any answers. But when my friend died, I couldn’t help but wonder how someone who believes in a God can justify what happened to her. It’s the classic question – “why do bad things happen to good people?” See, I understand that religious people generally believe in free will, so sometimes when bad things happen to us it’s a result of some action we took. For instance, if I drove my car to the grocery store while it was snowing and got into an accident injuring myself, it’s reasonable to assume that my choice to go for a drive while the roads were slippery played a role in my injuries. It was my choice, and I paid the consequences, despite how inherently good or bad I might be. I also understand that the definition of “good” or “bad” is going to vary between people.

However, I’m not sure of anyone that would consider an early death, like what Carolien had to endure, a good thing. And I don’t think her brain tumor had anything to do with a choice she made (in contrast to some cancers, like lung, which are often caused by an action like smoking). There was nothing she could have done or put into her body that caused that brain tumor – it was some sort of perverse accident, a deadly combination of genetics and environmental factors beyond her control. So then I ask, if you believe in God, what is your justification for this occurrence? Why did God give Carolien a brain tumor (or allow her to die of a brain tumor) while letting serial rapists live? Why did God allow a tsunami to kill over 200,000 people in 2004, while doing nothing to stop a repeat child-molester? Is it because “God works in mysterious ways”? That response always seemed like a bit of a cop-out – if you don’t know the answer, say so. Did my friend sin, and this was her punishment? I don’t buy that – she wasn’t perfect (no one is), but there are many people in this world far worse. Did God smite her just for his own amusement? Or it is possible, just maybe, that God had nothing to do with any of this – that sometimes life sucks and good people pay the consequence?

If God is loving and all-powerful, then he would have saved my friend. He wouldn’t have let her die before her parents, leaving behind a friend who is now considering with continued attention what goals he has left that didn’t involve a lifetime with her. The world is a worse place today, because Carolien is no longer here to share her love and talents with the rest of us. I wrote this blog in loving memory of my dear friend Carolien may she rest in peace for the love of all.

The Old Sailor,

Other Side of the World

Dear Bloggers,

This song makes me cry as it is so true.
No more words are needed from my side.
Ok I will give you the lyrics:

KT Tunstall - Other Side Of The World

Over the sea and far away
She's waiting like an iceberg
Waiting to change but she's cold inside
She wants to be like the water

All the muscles tighten in her face
Buries her soul in one embrace
They're one and the same just like water

And the fire fades away, most of everyday
Is full of tired excuses but it's to hard to say
I wish it were simple but we give up easily
You're close enough to see that
You're the other side of the world to me

And on comes the panic light
Holding on with fingers and feelings alike
But the time has come to move along

And the fire fades away, most of everyday
Is full of tired excuses but it's to hard to say
I wish it were simple but we give up easily
You're close enough to see that
You're the other side of the world

Can you help me? Can you let me go?
And can you still love me
When you can't see me anymore?

And the fire fades away, most of everyday
Is full of tired excuses but it's to hard to say
I wish it were simple but we give up easily
You're close enough to see that
You're the other side of the world

You're the other side of the world

You're the other side of the world to me

The Old Sailor,

They call me fibromyalgia

Dear Bloggers,

Let me introduce you to my new companion in life.
I found this on the Dutch fibromyalgia site and translate it, as it comes quite close to my feelings.

Now they gave it a name and now the fight against it finally begins.

Hello,

I am an invisible disease.

I am now with you for the rest of your life.

Others around you to see me, but your body feels me.

I can attack you when and how I want.

Also I can take care of you by giving severe pain attacks.

And if I'm in a good mood I can even ensure that you have pain.

Remember that you did a lot with your energy and had a lot of fun?

Well, I took that energy away from you and gave you fatigue instead.

You now also trying to have fun, but I get you out of your sleep and give you a headache in return!

You know what I can do more?

I can ensure that you vibrate inside and you are cold or hot when everyone feels normal.

I can also make you anxious and depressed.

You did not ask for me but I have chosen you.

Why?

Perhaps by a trauma (car- crash/whiplash, surgery....?) That you had.

Or by a virus that you caught somewhere.

Anyway, I am here now and I will stay!

I hear you went to a doctor, to get rid of me.

Hahaha, I rolling over the floor and laugh!

Keep on trying!

You will be going to many doctors if you finally can get rid of me.

Also you will probably be packed with pills: sleeping pills, vitamins, painkillers, energy pills?

You will get massages and sometimes they will tell you that you are anxious and depressed. They will tell you that if you take pills on time, and do your exercises well, I will go away.

But the worst is that sometimes you will not be taken serious, when you are yelling at the doctor that you do'nt have a normal life anymore.

Your family, friends and colleagues will all listen to you until they are sick and tired of knowing how I let you suffer and that I am a disease from hell.

Some will say: "You just have a bad day" or "Yes, you can not do anything more that you could ten years ago."

They are not you then say: "Ten years ago? Ten days ago!"

Also, some will talk behind your back while you slowly get the feeling that you are losing your self-respect.
Still you try, while you know, to explain them so they would understand.

This can be especially difficult if you have one “normal” person where you are talking to, because sometimes you'll suddenly forget what you wanted to say.... The only people who really understand you and support you are, the people in whose body I am also present.

And unfortunately, you will also discover that your true friends you can count on 1 hand.

But the ones who are there are those, which are there for you REALLY!

The Old Sailor,

Slowly we are getting somewhere!

Dear Bloggers,

Do I have to call myself a “sick” man?
I went to the rheumatologist this week and it was getting a bit closer to a verdict, at least it is not rheuma, but on the x-ray of my lungs there were some doubts and I will be send to the next specialist.
On the second of June, I have an appointment with the lung specialist.
To do some more tests and hopefully to elimenate the Besnier - Boeck disease.
This disease is also quite good in hiding, although if you get the granulomas on your skin they are pretty obvious, I would say.
I have just been wandering why this disease is so hard to figure out, as we are having so much knowledge in this western society.
Oh... for crying out loud can somebody tell me what is going on.
I found the following item on the wikipedia site.(this is pretty depressing, nice stuff for rainy days.)





Sarcoidosis (sarcoid = sarcoma-like, -osis = a process), also called sarcoid or Besnier-Boeck disease, is a multisystem disorder characterized by non-caseating granulomas (small inflammatory nodules). The cause of the disease is still unknown. Virtually any organ can be affected; however, granulomas most often appear in the lungs or the lymph nodes. Symptoms usually appear gradually but can occasionally appear suddenly. The clinical course generally varies and ranges from asymptomatic disease to a debilitating chronic condition that may lead to death.





The cases that it leads to death are not even 5% but it seems to be difficult to diagnose it.
Maybe it might be more positive if they can elimenate sarcoidosis it will be diagnosed as fibromyalgia, a very painful but not destructive disease.
(anyway I will be placed on a course together with my wife how to deal with the pain and how to deal with practical things in life.)
Also for my partner is this a complete turn around and she will have to learn to help me in so many different ways.
As it will be difficult for the both of us to deal with the fact that I cannot do certain things in life anymore and she has to offer a helping hand.





Fibromyalgia (new lat., fibro- fibrous tissue, Gk. myo- muscle, Gk. algos- pain), meaning muscle and connective tissue pain (also referred to as FM or FMS), is a disorder classified by the presence of chronic widespread pain and a heightened and painful response to gentle touch (tactile allodynia).[1] Other core features of the disorder include debilitating fatigue, sleep disturbance, and joint stiffness.

I was also send to dietician to loose some weight and get another style and rythm of eating.
As soon as they have diagnosed what it is, I will be send to a fysiotherapist to learn to move in the right way and have breaks in between and to force myself to rest, eventhough I have a good day.





It is great to finally know what it might be, but on the other hand it is scarey.
Thank god the sun is shining on this cloudy medical future.
Well let me end with the following qoutes:"That pain doesn't hurt me, neither does life, it doesn't matter what happens, I will survive!" and "I think what messes us up the most is that we all have this perfect picture of the way things should be.. So turn your face to the sun and the shadows will fall behind you."

The Old Sailor,

painful fingers

Dear Bloggers,

If you find yourself moved to write me about something, you may reasonably expect to get an answer.
That isn’t likely to happen, though, and I’d like to tell you why. I simply cannot be your pen pal.



Three or four months ago I woke up one morning, showered, dressed, grabbed a cup of coffee and jumped in my car to go somewhere.
That was when I discovered that overnight, without warning, my right hand had so enfeebled itself that I couldn’t turn the key in the ignition.
The rest of my body seemed to be aswell affected, so I reached over with my left hand to start the car, meaning to ask my doctor what the hell was going on this time at the next chance I got.



I will start from the beginning I went to my own doctor and told her about my stiff fingers and being totally stiff in the morning hours.
As we came to the conclusion that I had mentioned this last winter as she looked through my files.
We blamed it on the cold and moisty weather and that it would disappear when springweather would come.
A few months later I took up the talk again as there was no progress in my situation.
There are good days and there are bad days.
It is getting so bad that getting up in the morning has become a challenge.
The morning stiffness is the biggest issue, after a hot shower I am getting slowly in motion.

I ended up talking to a doctor of internal diseases and an eye doctor, being subjected to various high-tech tests.
What’s going on appears to be a rheumatological problem.
Fortunately for me, they take their time about it, but they’re pretty thorough.
The fingers of my right hand are the worst affected so far.
What makes that annoying is that I use that hand for writing.
At least the first draft of a lot of my blogs was written by hand.



That option is no longer open to me, because my handwriting, always atrocious, is now often quite illegible even to me.
Also my job is getting to heavy and it is bitter if you have to give up on something you like.
One of the biggest problems is the fatigue attacks and the sleeping disorder.
Being tired all day is very heavy, but I am starting to turn things around.
The pain I am living quite good through, although it is hard sometimes.
I try to see the positive sides of my situation.
If I go out for a walk to get my body in motion, I breath in the fresh air and enjoy what nature is showing.



Remains the computer.
That still works for me, but not easily.
I can still touch-type with my left hand (in the old days at almost about fifty words a minute not superfast but good enough) but the right hand can only hunt-and-peck with the forefinger.
Not that I was that good in typing with all fingers something I never learned eventhough I had a course in it.
Isn’t life hilarious?

This is bad news.
It’s horribly slow and prone to a million mistakes, which I have to correct as I go along, and, worst of all, after a page or two my right index finger begins to get pretty painful.
So my writing time, whether for blogs, letters or any other task, is limited. Therefore, at least until I finish a couple of things I really want to write, correspondence time is squeezed even harder than my cervical nerves.
A blog like this normally took me one or two hours, now it takes up to four days.



And listen, this isn’t a plea for sympathy.
Hey, I’m 41 years old.
That means that I am far luckier than most of the people I know in being still able to write at all.
It’s just to say that if you ever happen to think you should properly have had a longer letter or mail from me, or indeed any letter or mail at all, it isn’t that I don’t treasure you, it’s just that my fingers hurt.

The Old Sailor,

Bad days can have good moments

Dear Bloggers,

For now this will be the last blog written after work as I will write the coming ones from ashore Due to heavy pain caused by some kind of arthritis like problem, I have had a few bad days but I have enjoyed the good moments of them. It is just that the job is becoming too heavy for me at this point and I have to live on strong painkillers just to make it through the day. So I will call in sick for the next few months and hope that they can at least give me a diagnoses of what is hitting me so hard.


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I must say my days go pretty well. I'm past feeling burdened by every thought, sight, body movement, and interpersonal interaction. I've moved into a phase of feeling mostly like myself while still experiencing moments of muscle cramps and muscle aches each day. (Surprise!)
Only the nights are like a cheap horror movie, I wake up in the middle of the night due to this razor blade sharp pain attacks and they come without any pre-warnings. I have to get up and go for a hot shower too take the sharp edges off.



A wise and elderly person (my dear mum) told me years back when I was a little sailor, that even when it is though times you have to try and look for the sunny side of live, and it can be pretty clouded I can tell you.



"Sometimes it's hard for you to keep up the dance of daily life while you are processing your feelings. Nevertheless, you can do it, even if you are hurting inside. Keep in mind that your emotions are raw and tender now; they wouldn't survive in their present form if they were on public display. Don't judge yourself negatively; you'll know when to share your heart."

I read this once somewhere and saved it in my notes for later and look it became useful today .

I thought that was pretty applicable! I am keeping up that dance. From the outside, all looks normal with me. (I think. I hope!) And I feel fairly normal — for good, long stretches of every day — from the inside. Although it is sometimes hard to laugh, when you are in a lot of physical pain, and having a sunny character that is held back by medication.





But inside is definitely where I'm keeping what remains of those raw, tender emotions and cutting through pain of all parts that can move. I've reached a point at which I don't feel better letting my emotions out. Talking about them doesn't help, but hanging on a bit and nursing them does. I am simply not the person that wants to be someone they feel sorry for. I hold my head up high as long as I can.

All in all, I'd say time is doing its thing.

The Old Sailor,

Already today my body has become my enemy

Dear bloggers,

Yesterday was the day that I had to go to the hospital; hopefully they will come soon with some results as living with pain 24/7 is unbearable.
At least that is what I think.
As all the results of yesterdays examinations brought absolutely nothing.
My day at the hospital started at 09:30 and ended at 17:00 well I was fully in a sarcastic mood when we went home.
Only a lot of frustration was what they could offer me, and for **** sake it is eating me alive.



If they can at least tell me what my future will bring me, and even if it means that I can work only a few days a week.
It will give me something to struggle with.

Well this how my day looks like, when I am home.
I love my family and I know they love me.
A little understanding would go a long way.
It is 6:15 am. I stumble towards the bathroom as hot water is a relief and helps me to get in motion.
Already today my body has become my enemy.
Some days are worse than others, and I have not held myself back enough lately.
I have been enjoying my kid's playing outdoors too much.



The pain bothers me all night long every night, all day every day.
No position is comfortable.
I keep moving and trying to position my body so it won’t hurt so badly.
The alarm goes off, I wasn't asleep but it still surprises me.
When I stand PAIN! My feet hurt so badly, and it just goes on up my body like a tidal wave.
Sometimes it brings tears to my eyes.
I try hard not to let any one see me when it is this bad.
Just my wife but she is most of the time sound asleep.
Some days are worse and this day is worse.
I just keep moving, walking praying my muscles and joints will loosen up enough for me to enjoy the morning with my daughters.



I want to take my muscle relaxer and a paracetamol when they leave.
Words cannot describe what I feel; is it called fibromyalgia or polymyalgia or is it Lyme disease?
What ever name it is given it has had me in its grip since this winter.
Sometimes I don't know what causes it.
It takes me by surprise I may make a soft grunt or moan.



I am feeling horrible and it is coming out as I am grumpy and burst out in anger if they are not listening.
I know it is wrong to yell at the ones that you love.
But god it is difficult sometimes.
You know that no one wants to hear you moan or complaining.
The pain has control, I am exhausted, my whole body hurts, and even my eyes feel dry and gritty.
It feels as if my bones are cutting through my muscles, tendons and skin.
It feels as if I am metamorphosing, my muscles can no longer support my bones and are melting away.



I feel I am turning into something ugly; I don't want to go out unless I absolutely have too.
It hurts and I am so tired of this PAIN second after second, minute after minute, hour after hour, week after week.
I cannot keep up with housework; the rare visitor probably thinks that I am lazy.
I see the looks I get. I am not lazy. I am disabled (ugly word).



I work still a full time job at the receptiondesk of a ferry, raising together with my wife two daughters.
I did all of this at the same time.
I was strong, the busier I was the more I loved it, but all of a sudden I had to take it easy and it was the start of a life full of pain.
I say this to people who don't have Acute Chronic Pain; do not judge me.
I may look normal enough if you don't look close.

But know this you are fortunate.
I am in constant, unending, unrelenting PAIN.
It rules my life, my family’s life.
It seems I only exist at times.
My empathy to all of you who suffer as I do.

It took me a while too write this story, but it is worth it as my life is at certain times pretty frustrating.

The Old Sailor,