The Real Reality
When I started this blog I genuinely believed that by keeping a diary of what was happening to me it would do some good in helping the doctors to understand a condition that they seemed to have no idea about and I hoped to help the doctors help me and others like me.
I found it hard to come to terms with the fact that the doctors never seemed to have any answers and every test I went to came back negative. I knew there was something wrong and I believed that by creating this blog it would help researchers, doctors and people more experienced than me in the medical profession to understand.
I was wrong - the doctors are not interested in something they don't understand. They're only interested in filling in the right statistic so that they will still receive their grant money at the beginning of each year.
The doctors, surgeons and nurses aren't interested in 'helping us' at all. They find us interesting as specimens or their work provides them with a wage they wouldn't normally get if there didn't have an endless supply of bodies to practice on.
The bullshit spin that we have all been fed about doctor 'wanting to help us' is the biggest load of rubbish I've ever heard.
If you go to a GP with something they don't understand they will either (1) Lie to you and tell you there's nothing to worry about and hope you will go away or (2) Say they will send you off for tests which always come back as negative and then they promptly forget to tell you the results. This procedure could take months, even years and while their not diagnosing you they don't have to treat you and therefore they are saving money.
If you make it into hospital and the doctors don't know what's wrong with you but understand that if they don't treat you immediately you will more than likely die, then they will try any treatment they can, regardless of whether you want it or not. Then leave you alone for hours, sometimes days to see what the effects will be (since they probably don't know themselves).
If you die, in the meantime, they simply forget about you - after all 'we can't help them all' or 'there were some unexpected complications' etc. They never tell you the whole truth about what's been given or not given to you and whenever you complain about something they apologize profusely and say 'I don't know how that happened, it's never happened before'. This is a load of rubbish - it happens to everyone!
Did you know that in an emergency situation where the doctors believe you will die if not given treatment straightaway that they have the power to do and practice exactly what they chose to do, regardless of your wishes. (Unless you can produce a legal document straightaway to say you do not want treating).
Most of us don't think about being in an emergency situation because we don't believe it will happen to us but the real reality is that we all die regardless of who we are and what age we are.
The doctors will happily leave you in a permanently disabled state with no quality of life because they have the power to practice on you what they please.
When you have lived for many years or even just a short space of time being totally reliant of other people to look after you - and wash you and dress you and you remain housebound without help to get out - it is unsurprising that you may wish to end it all but of course our ridiculous laws say that we are not allow to commit suicide (and we probably couldn't because we would be unable to do anything for ourselves anyway) and of course, we could not ask someone (like the dam doctor who left you in this state) to help you end it all because he is sworn an oath to preserve life (no matter how miserable you life is) and not take it.
Haven't they got it all nicely package up to suit them?
For anyone's information I have now written my living will and I am refusing go to any appointments the doctors send me. They are a waste of time (mine time that is) and the doctors don't even tell you the truth when you ask for it - so I don't see the point of going.
I was criticized for self medicating on steroids before my hospital stay last year and while I was in hospital they took great delight in weening me off them and gave me only paracetamol for pain relief (which was about as effect as taking smarties). Ironically after I came out of hospital and couldn't leave my chair without suffer intense pain the doctor finally offered me steroids on prescription (hypocrite's).
As for taking Warfarin to prevent strokes and heart attacks. I was entitled to home visits from the District Nurses. Every time she turned up she moaned persistently about whether or not I could make it to the surgery instead of them coming out to see me. She also had a habit of turning up unannounced. I think this was so that they could try and catch me out at some point. Then they would say, if you can get out of the house you don't need home visits. I pointed out to them that if you don't answer the door it doesn't mean you're not in. It could mean that you're in alone and didn't hear the door or you could have been in the bath or you couldn't get up on your own or otherwise indisposed. I have also explained to them that if I wish to leave the house it involve someone else to help me. This means that if I have to go to the surgery it not only involves fitting in around their available times but also my available times and the person that would be helping to get there. This happens rarely.
I wrote my GP about this matter and he said 'the District Nurse are a law under themselves and will set their own rules'! I have refused to see them on the terms that they are allowed to turn up whenever they see fit and I have stated that I will hold them responsible if I have a heart attack or a stroke because they don't have enough courtesy to tell me, in advance, when they intend to come.
I also did my own experimenting with Warfarin since the doctors seemed to be unnecessarily taking my blood. I monitored what they recommend for me and I came to realized that often the dose they recommended would actually make my blood count sway too far one way or the other for the next time I had a test done. So I set myself a dosage which I believed was more effect then what they recommended. I have maintained a stable IRN level for over 4 months now by taking the Warfarin my way. I informed my GP that I didn't think it was necessary to take my blood more than once a month. He informed me that it needed to be taken more often than that (for no apparent reason) and that it was dangerous to only have a monthly test!
I would say it is also just as dangerous to not take it at all therefore taking it and having a blood test once a month has to be a safer bet than nothing.
I believe they are using my blood for reasons they are not informing me of and they do not have my consent to do so. This provides the doctors with more research information to put in their forms and it keeps the depressive District Nurses in work. Even though they apparently don't like to doing what they are employed to do.
That's a good summery of the Social Services as a whole!
The doctors told me as little as possible about my conditions while I was in hospital (probably because they didn't know much either). Then they fed me little snippets of information for a few months after I came home and told me I needed monitoring. I would think twice about taking any notice of doctors when they say 'do not stop taking this medicine without consulting your doctor'. I stopped taking mine and I feel a lot better because I did. In fact the tablets they've been giving me for my heart have actually left me in constant pain and I started to have more frequent AF episodes. I have stopped taking the tablets and the pain has almost gone and the AF episodes have diminished. Of course I realised that my heart condition is not going to go away but I would much rather die a natural death than suffer a death by doctor induced 'medicine'.
I learnt far more about what was happening to me via the internet and I do not feel ashamed of self medicating because the doctors haven't got a clue what to give me anyway.
When I asked for a copy of my medical records they said I would have to pay an administration fee of £50 in order to do so. Which of course I can't afford now I can't work because I sick - what a joke!
I also found out, via the internet, that the doctors have a right to 'withhold any medical information' they have on you 'if they consider it harmful to you'. I find that is a very broad statement, open to interpretation and would like to know how the doctors decided what information would be harmful when the don't even know me. Everyone is different and some people take news, good or bad, in different ways, so how can they be the judge of what is harmful to me? I think I should be given the opportunity to decided that for myself and I am certainly not willing to give these GOD believing doctors £50 for the privilege of see my own medical records which have been censored before I even see them.
The words disgusting and shocking come to mind.
For all my visitor from overseas I would like to let you know that our Government are trying hard to turn this Country into a dictatorship and everything to do with the Government, like the Social Services, the NHS, our benefits system is completely dysfunctional and no longer fulfils it's purpose.
We are treated like criminals and beggars. We are expected to be 'polite' at all times to the those that ignore us, deny us any help and try hard to cover their own backs for all the mistakes they make.
Every member of the Social Services, NHS and Benefit System, in fact any civil servant (which I'm told totals about 75% of our working population) is not longer held accountable for their actions. This includes our Government and all who reside therein. This means they currently have a free hand to treat everyone exactly like they please and they are treating us all with contempt.
Personally if I was an investor I would go and invest somewhere else and if I was looking for an excuse to go to war then target us and get our Government out.
They are literally getting away with murder!
Did you know that in an emergency situation where the doctors believe you will die if not given treatment straightaway that they have the power to do and practice exactly what they chose to do, regardless of your wishes. (Unless you can produce a legal document straightaway to say you do not want treating).
Most of us don't think about being in an emergency situation because we don't believe it will happen to us but the real reality is that we all die regardless of who we are and what age we are.
The doctors will happily leave you in a permanently disabled state with no quality of life because they have the power to practice on you what they please.
When you have lived for many years or even just a short space of time being totally reliant of other people to look after you - and wash you and dress you and you remain housebound without help to get out - it is unsurprising that you may wish to end it all but of course our ridiculous laws say that we are not allow to commit suicide (and we probably couldn't because we would be unable to do anything for ourselves anyway) and of course, we could not ask someone (like the dam doctor who left you in this state) to help you end it all because he is sworn an oath to preserve life (no matter how miserable you life is) and not take it.
Haven't they got it all nicely package up to suit them?
For anyone's information I have now written my living will and I am refusing go to any appointments the doctors send me. They are a waste of time (mine time that is) and the doctors don't even tell you the truth when you ask for it - so I don't see the point of going.
I was criticized for self medicating on steroids before my hospital stay last year and while I was in hospital they took great delight in weening me off them and gave me only paracetamol for pain relief (which was about as effect as taking smarties). Ironically after I came out of hospital and couldn't leave my chair without suffer intense pain the doctor finally offered me steroids on prescription (hypocrite's).
As for taking Warfarin to prevent strokes and heart attacks. I was entitled to home visits from the District Nurses. Every time she turned up she moaned persistently about whether or not I could make it to the surgery instead of them coming out to see me. She also had a habit of turning up unannounced. I think this was so that they could try and catch me out at some point. Then they would say, if you can get out of the house you don't need home visits. I pointed out to them that if you don't answer the door it doesn't mean you're not in. It could mean that you're in alone and didn't hear the door or you could have been in the bath or you couldn't get up on your own or otherwise indisposed. I have also explained to them that if I wish to leave the house it involve someone else to help me. This means that if I have to go to the surgery it not only involves fitting in around their available times but also my available times and the person that would be helping to get there. This happens rarely.
I wrote my GP about this matter and he said 'the District Nurse are a law under themselves and will set their own rules'! I have refused to see them on the terms that they are allowed to turn up whenever they see fit and I have stated that I will hold them responsible if I have a heart attack or a stroke because they don't have enough courtesy to tell me, in advance, when they intend to come.
I also did my own experimenting with Warfarin since the doctors seemed to be unnecessarily taking my blood. I monitored what they recommend for me and I came to realized that often the dose they recommended would actually make my blood count sway too far one way or the other for the next time I had a test done. So I set myself a dosage which I believed was more effect then what they recommended. I have maintained a stable IRN level for over 4 months now by taking the Warfarin my way. I informed my GP that I didn't think it was necessary to take my blood more than once a month. He informed me that it needed to be taken more often than that (for no apparent reason) and that it was dangerous to only have a monthly test!
I would say it is also just as dangerous to not take it at all therefore taking it and having a blood test once a month has to be a safer bet than nothing.
I believe they are using my blood for reasons they are not informing me of and they do not have my consent to do so. This provides the doctors with more research information to put in their forms and it keeps the depressive District Nurses in work. Even though they apparently don't like to doing what they are employed to do.
That's a good summery of the Social Services as a whole!
The doctors told me as little as possible about my conditions while I was in hospital (probably because they didn't know much either). Then they fed me little snippets of information for a few months after I came home and told me I needed monitoring. I would think twice about taking any notice of doctors when they say 'do not stop taking this medicine without consulting your doctor'. I stopped taking mine and I feel a lot better because I did. In fact the tablets they've been giving me for my heart have actually left me in constant pain and I started to have more frequent AF episodes. I have stopped taking the tablets and the pain has almost gone and the AF episodes have diminished. Of course I realised that my heart condition is not going to go away but I would much rather die a natural death than suffer a death by doctor induced 'medicine'.
I learnt far more about what was happening to me via the internet and I do not feel ashamed of self medicating because the doctors haven't got a clue what to give me anyway.
When I asked for a copy of my medical records they said I would have to pay an administration fee of £50 in order to do so. Which of course I can't afford now I can't work because I sick - what a joke!
I also found out, via the internet, that the doctors have a right to 'withhold any medical information' they have on you 'if they consider it harmful to you'. I find that is a very broad statement, open to interpretation and would like to know how the doctors decided what information would be harmful when the don't even know me. Everyone is different and some people take news, good or bad, in different ways, so how can they be the judge of what is harmful to me? I think I should be given the opportunity to decided that for myself and I am certainly not willing to give these GOD believing doctors £50 for the privilege of see my own medical records which have been censored before I even see them.
The words disgusting and shocking come to mind.
For all my visitor from overseas I would like to let you know that our Government are trying hard to turn this Country into a dictatorship and everything to do with the Government, like the Social Services, the NHS, our benefits system is completely dysfunctional and no longer fulfils it's purpose.
We are treated like criminals and beggars. We are expected to be 'polite' at all times to the those that ignore us, deny us any help and try hard to cover their own backs for all the mistakes they make.
Every member of the Social Services, NHS and Benefit System, in fact any civil servant (which I'm told totals about 75% of our working population) is not longer held accountable for their actions. This includes our Government and all who reside therein. This means they currently have a free hand to treat everyone exactly like they please and they are treating us all with contempt.
Personally if I was an investor I would go and invest somewhere else and if I was looking for an excuse to go to war then target us and get our Government out.
They are literally getting away with murder!
Here's my Food For Thought page on Facebook if you'd care to take a look at that - https://www.facebook.com/groups/1375522316001688/ I wonder - has this just come about through the ignorance of not being aware of what we now ingest on a daily basis or could this have been done deliberately? No wonder we are all apathetic. Could it have something to do with being slowly poisoned every time we eat.
**
At the beginning of April this year I was admitted to hospital with sepsis due a food abscess During my long, tedious, drawn out stay of three and a half months I was diagnosed (among other things) with Fibromyalgia - http://ukfibromyalgia.com/what-is-fm.html. This answers a lot of question regarding the way I have been feeling. It's possible that heart condition was just an unlucky DNA draw but it's also possible the Fibromyalgia could be the cause of my hearing loss.
Please read the information on the website if you thing any of these symptoms apply to you and please let me or someone else know if you have inner ear hearing loss as well.
What has gone on before.
I was diagnosed with inner ear hearing loss at the age of 15 years old. The doctors shrugged their shoulders and shook their heads when it came to explaining the cause and decided I must have had it since birth.Five years ago I changed my diet from chocs, ice cream and sweets to a more healthy lifestyle and my hearing started to improve. I went to the doctors and requested a hearing test. However it was three months later before I got one and my hearing had stopped improving by that time. My earlier medical records had been lost, since I’d moved around a lot, so we had nothing to compare the hearing chart to. Therefore I couldn’t prove my gain. For a lack of any other explanation the doctors decided that I’d had a middle ear blockage (caused my an unhealthy diet) on top of the original inner ear loss.
I didn't believe this but there was nothing I could do so I accepted it and got on with my University Degree.
At the end of 2009 I developed blurred vision in my left eye which I went to the doctors about. After being referred to the specialist I was told that it didn't warrent any treatment, and to return in three months time. I wasn't happy with this, since those of us with hearing loss know, that without our hearing we NEED our sight! So I went looking for a treatment myself. After doing some research into possible causes and treatment I bought some steriods online. This sparked off another hearing gain and so I decided to pursue it once again.
As I pursued other symptoms I was suffering from (mostly those associated with diabetes - (including extreme lathary, dry skin, a craving for sugary things, blurred vision etc) so I bought myself a blood sugar level monitor and realised that my sugar levels (while not high enough to be classes as diabetes) still remained higher than they should. As an example, if we regard five (5) (on a British monitor) as absolutely good, then my sugar levels were staying between seven (7) and eleven (11) even after two hours of eating.
I then decided to self treat myself with insulin to bring my sugar levels back down to five (5) within two hours of eating. Getting the right insulin and the right dosage took many months. I also continued to experiment with different dosages of steroids while doing this and by October 2010 (please see my charts) I had managed a ten (10) decible hearing gain on two levels and was registering two sounds that hadn't been present before, even on my charts five years ago.
Many of us, as we get older, suffer from varying ‘unexplained’ complaints that the doctors will often put down as ‘old age’. Aches and pains, tiredness, feeling run down or cold like symptoms, shortness of breath when we climb the stairs; our eye sight starts to go and our hearing deteriorates. All of these I suffer from and believe they are all related to the same thing. I’m not saying that some of these symptoms do not belong to ‘old age’ but what if . . . all or some of these symptoms also belong to an undiscovered condition which ‘mostly’ develops as we get older but can also happen when we're young too?
Doctors know that if our blood sugar levels go too high (Diabetes) we can suffer from the following symptoms, the need for frequent urination, drowsiness (extreme fatigue), nausea, extreme hunger and/or thirst, blurring of the vision. If you are diabetic you need to inject yourself with insulin (your Pancras isn’t doing this for you as it should) in order to bring your blood sugar levels down and so relieving these symptoms.
My proposition is that many people don’t suffer from this ‘extreme’ form of diabetes but DO suffer from a more slow moving form that in turn causes tiredness, thirst, blurred vision, hunger and frequent urination. It also causes hearing loss! Audiologist believe that the little hairs that transmit sound in the inner ear have been destroyed therefore nothing can be done. I believe that this form of diabetes causes swelling in the inner ear and so suppressing the little hairs preventing them from transmitting sound. If the cause for this swelling is taken away then the hearing should be retrievable. I wonder if the ringing in our ears (Tinnitus) is our little hairs trying to tell us that they're alive and well but they're just unable to do their job properly while this condition prevails?
By November I came to the conclusion that it was the sugar that was the cause of the problem. Doctors say that for a diabetic any food that contains less than 2g of sugar (what I mean by sugar is the cane or beat variety that you buy in bags) this is regarded as 'free' food. Meaning you can eat as much of it as you like and you shouldn't need to use insulin afterwards.
At the end of November I came to the conclusion that even the smallest amount of sugar was harmful. I could feel tightiness in the back of my neck and head and still felt tired after I eat. Doctor's know that sugar is the cause of diabeties but don't, at the moment, differentiate between the different types of sugars. However cane and beat sugar has absolutely no nutritious value what-so-ever; it taste nice and preserves food and that's it! It is also know that sugar destroyes the white blood cells. We need our while blood cells to heal! Armed with this information I decided to cut all none nutritious sugar out of my diet.
I found while following this diet that my sugar levels dropped very quickly in the first month and I didn't need to use the insulin. I also felt I needed to eat again within an hour and a half so I eat a lot of small meals often. At the end of the first month the need to eat lots and sometimes through the night had abated and I started to get it more under control. To start with I eat any food that didn't contain sugar (since this leaves a limited amount of things you can eat anyway).
However after a couple of months of cutting the sugar out I found that my hearing started to regress again and my blood sugar levels once again remained higher than they should.
This had lead me to believe that through generations of over eating empty sugar products our bodies have come to develop a general intolerance to 'all' sugars - whether these are the cane or beat variety or whether they are the nutritious one. I took a good, long hard look at my diet and, by keeping a food diary, I realised that there were some big gaps in my nutrition with some properties being totally left empty. I decided to hone in my diet to eating only sugar free foods that contain high nutritional value and kept up my food diary until I was sure I was getting 'all' the nutrition I needed to be healthy. Of course this has made me feel a whole lot better but I was still feeling the effects of the food around the back of my head and in my ears every time I eat.
With regret recently I've felt the necessity to go back to using the insulin again.
So this was what I tried next. No cane or beat sugar what-so-every with about 10/12 units of insulin (Apidra) before each meal. This can be bought from http://www.goldphama.com/. It acts within fifteen (15) minutes of injecting but can be used up to forty-five (45 mins) after you've had your meal. You will have to regulate this yourself since these units will vary with what types of food you eat (and which kind of monitor you use) and how much you eat. I would recommend that you eat three (3) meals a day, cramming in as much nutrition as possible into small meals (remembering that too much of anything will cause a reaction so you really need to understand all food nutition - please see my food charts at the bottom of the page). Test your blood sugar levels two hours after each meal. If it is between 4.5 and 5.5 (on a British monitor) then it's good. If it's lower than that then you might be feeling hungry again and tired and you could suffer from hypoglycaemia. Please be very careful when administering insulin, especially for the first time since too much could cause a low blood sugar level coma. The best way to treat low blood sugar levels is to eat something. Many doctors recommend eating something sugary. This will raise your blood sugar levels again very quickly but then you end up on the low blood sugar back to high blood sugar; to low blood sugar levels roller coaster. Since there is very little margin of error in keeping your sugar levels as close to five (5) as possible I would recommend that you eat anything to bring your blood sugar level up (but not sugar). I've done this and it worked just as well. Then test your blood sugar levels again two hours later to make sure they've not remain high.
If it's higher than five point eight (5.8) then that it's too high therefore you need to get it down again. Check your blood sugar levels first thing in the morning as they can rise at night without you realising it but I've found by cutting out the sugar it doesn't happened very often. If this does happen however I use Actrapid (which you can buy from http://www.pharmacyescrow.com/ which is an insulin that last for twelve (12) hours. I'd say injecting 12/14 unit would be enough.
But this too wasn't enough!!
During my journey I had noticed that whether used insulin or changed my diet I had a short term hearing again after each but couldn't maintain it long term. I had received comments from some of you on various post that this has also been the case with you. So this is the next thing to try . . .
Always bearing in mind that understanding what a good diet is.
I have come to the conclusion that eating a certain quantity of sugar (the cane and beat variety) is very important to find the ultimate in a well balanced, healthy diet. I have tried various diets and found that by cutting the sugar entirely out of your diet can have just as many harmful effects as good ones. Therefore it now a matter of finding out exactly how much sugar we need to eat in order to maintain the right balance. I found that on the diabetic diet of not eating anything more than 2g of sugar it left me craving for sugar and it left me without energy and feeling listless. I tried eating as much as 15g of sugar (with each meal) and, after about 3 days, this made my heart rate go mad and erratic and again I felt tired and had no energy. So now I go on a meal by meal, day by day basic.
The hard part is giving anyone who wants to try this an accurate amount of sugar to eat since this is very much something you're going to have to monitor and decide for yourself. We all vary in shape and size, the amount of exercise we do and how many calories we burn off each day and all these factors will have a bearing on how much sugar (and other foods) you will need to eat.
This is the way I do it and you can hopefully use this method as a way of helping yourself.
I take my blood sugar levels first thing in the morning and last thing at night. You are aiming to keep it at 5 (British measurement) or thereabouts. Over 5.8 is too high, under 5 usually means you need to eat something! Then take your blood sugar levels two hours after you've eaten. You need to eat a certain quanity of sugar with each meal which is more than 2g and less than 15g. One teaspoon of sugar is equal to about 5g. I 've found that eating about 10g of sugar to 150g of other foods works well. Your blood sugar levels will rise and stay risen whether you eat just whole food (no sugar) or if you eat too much sugar. I've found that if my blood sugar levels are slightly raised two hours after I've eaten I look at what was in my last meal. If I think I've eaten too much whole foods (fruit, veg, meat, fish, dairy, frutose, glucose, sweetners - anything in fact that isn't cane or beat sugar) then I will eat something sugary to counteract this. If I think I've eaten too much sugar then I find a cup of tea or even a drink of coke can often bring my sugar levels back down. This is something you will have to do for yourself. I can't tell you exactly how much to eat since will depend on what foods and drinks 'you're' eating and drinking and how much you have. The hard part is trying to decide how much sugar is in processed foods as it doesn't tell you. It only tells you how many sugar are in in total amount of carbohydrates in the produce. Guessing is the only way with these foods. Though I suppose you will eventually know how much more sugar (if any) you'd need to take with them simply through trial and error. Or of course, you can eat only whole, none processed foods, and add your own sugar that way will make it easier but less tasty!
Since using this diet I haven't used insulin at all. Sometimes I do still get it wrong and my blood sugar levels are still raised after two hours of eating but I try to rectify this through eating or drinking something since I believe this is better than using a medicinal product.
However there is a 12 hour acting insulin Actrapid which I used to use at night to ensure my blood sugar levels are good by the morning so that I could start each day on a good level. (I usually find I don't need more than 8 to 12 units). This insulin can be bought from www.goldphama.com, needles can be bought from most online chemist and blood sugar monitors, test strips lances I usually get from e-bay, if you want to use this method!
I continue to take 10g morning and night of the steroid Prednisolon which helps to deal with the aches and pain I feel on a daily basis and the tightness the foods cause around the back of my head. Even though I got heavy criticised for self medicating on my admission to hospital the doctors took me off the steroids to start with but now I'm back on them, on prescription this time, after they realised that they are a good way of keep the pain under control. The dosage the doctor started me on was 30g a day to be taken in the morning, every day for a week. Then he decreased the dosage to 20g a day for two weeks and now I'm currently on 15g a day for another two weeks. I will keep this updated according to my doctors recommendations.
Please help me to raise awareness of this condition and join the thousands of hearing loss suffers worldwide who have already viewed this blog by following my diet, contacting me at dawnshearingnow@googlemail.com, making a donation towards research cost, or tell your friends, tell your doctor, tell everyone!
Please read the comments left by the UK Hearing Research Team and also from Long Island CA who have started a case study into this method of treatment this year.
Please feel free to add your comments - the more the better :-)
