Yes I passed the visual skin check scan - no machines were used except a magnifying eye piece so I hope it was good enough. He (Bosworth) said I had considerable sun damage but the sun spots were all benign and he told me not to get the thing burnt off my forehead (as Dr Craig offered) because it is often not successful and more likely to leave a white spot from lack of pigment. Apart from a couple of moles on my legs they were all just sunspots - Seborrheic keratosis to be precise.
S turned up while I was in the shower getting ready. Apparently he had been to Nambour for an exam and he just popped in to pick up his mail. He did not stay even for a coffee but he said it was going alright down there and he seems to think he has a good chance of finding a job. Very good.
Last I heard he was going to quit Uni and do accounting at TAFE instead next semester.
Monday, August 27, 2012
Sunday, August 26, 2012
Scooter Dayz
I had a bit of a yarn with a shop keeper which was so easy because I did not have to stand up. Usually I am trying to cut conversations short even out the front of my own house because I hate standing still so much and I know Brian has been the victim of me being short. The scooter therefore has a positive effect on social interaction. Not to mention the many "Good morning" greetings you always get going along the main coastal walking path at Golden Beach.
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| This is where I parked for a sit on the towel today looking over to where I was yesterday |
It was a lovely day again today and I had no money to go to the shops so I headed off on the scooter again. I just went to the water front locally today, sat on a towel for a while on the grass listening to the radio and just watching people go by. I felt lonely today and just like I was simply killing time waiting to feel well enough to do something more active (like the housework or gardening) without risking a relapse. The sun was nice but maybe I would have been better off spending some more time in bed. I feel a bit 'dead dog'.
This last photo (via mobile phone) coming up next was on my way back home via a side arm of the Mangrove Boardwalk. A good place to go if I want a bit more privacy. There seems to be so much more mud flat than there ever used to be here. Perhaps it is because it has silted up here that when we get those King Tides, the water often rises over the boardwalk itself. You know Karla is extremely worried her house will be swallowed up by the water. But today, the tide was so low, the water was a long way away.
Saturday, August 25, 2012
Bloating Diet
I got all anxious and wound up just getting ready to go to Jan's (and mine by default) friend's 50th birthday lunch at Bellvista Tavern. There's a lot of money going into that estate. I went there years ago when the lake had been built and there were a the few occupied suburban streets. It is a large community now and still swallowing up more koala country just like Pelican Waters has and continues to do. Koala's are pretty much extinct here now - I guess the survivors are at Australia Zoo. Brisbane's Koala population doesn't look like being saved either. The remaining will be relocated.
Sharon's Mum has cancer in her blood but if it also turns into leukemia she will only have three months to live, in the meantime she and Sharon's Dad run a stall at the Caboolture Markets every Sunday and Sharon is part of it too doing the clothes side of it. They are going to America early next year (again) to get stock or contacts and this time they are taking Jan for a holiday too.
The meals were brilliant but I had to compromise my latest tortuous diet. Battered whiting and salad minus the chips with aioli is what I ordered trying to find something that would not compromise a low starch diet too much yet fit in with the lunch specials.
It seems I now have to eat a low starch diet in order to avoid wind and bloating which I've had for so many years or decades that I cannot even remember the start of it. It started with me reading about everyone's fructose malabsorption on the Facebook group and remembering that once upon a time I was told I had a sucrose, maltose and lactose intolerance. It was called a disaccaride intolerance at the time of testing back in the 80's. I had also been discovering that a gluten-free diet helped a little but it certainly wasn't the whole answer. I was always confused about the sucrose intolerance because out of every darn thing I put into my mouth table sugar is about the only thing that I can say does not cause an obvious digestive problem. No pain. No bloating. No attacks. I still love my lollies.
I have had the lactose intolerance taken care of by only eating low-lactose foods and drinking only lactose-free milk. I have tried other milk alternatives and didn't like them but now I find out that they contain starch so that maybe why. Well rice and soy milk do. Almond milk would be fine if I could afford it. I would not drink it now because I am getting enough almonds lately. Almond flour at its horrific price is the only flour that does not contain starch because it is mainly protein. I have been using almonds I had here and blending them into meal and making pancakes and biscuits but rationing them out. They are a bit heavy to eat but better than nothing. I don't get bloated either.
For the most part I have been eating meat, certain vegetables, berries, lemons, bacon, LF milk, chicken and fish. Most fruits have starch, many vegetables including potatoes, peas and corn, all cakes and biscuits and cereals including the gluten-free alternatives. Going without bread, rice, buckwheat (which I was using), potato, and porridge has been the hardest. There is obviously a certain amount of starch that I have to have and will be able to tolerate. I have been OK reintroducing a sachet of porridge or some tapioca pudding but I didn't get away with either the batter on that whiting or the aioli sauce because the day I went out for lunch I had pain and bloating. Up until then I had not had any bloating or glue-like stools. I guess it had been around five days of starch elimination by then. It is really a time-consuming process because package foods are out and it means so much more cooking. I allow myself Kantong Peanut Satay sauce so far. Peanuts are OK. I think Coconut Cream sauces could be OK but I will probably have to make it. Hopefully sweet and sour sauce will be OK too. It is all to do with the thickeners used. In fact I don't know what can be used as a thickener to make sauces that are starch-free. Modified corn starch is just one of the many possible starchy ingredients on most packet food.
Some of the things I remember that I now need to avoid are lactose, high-starch foods (which is all the good stuff), onions of different kinds, probably garlic, sorbitol (as an additive and in fruits), pear juice, wheat, probably gluten and finally inulin. They are putting inulin in everything these days. It is a fibre and I first found it in a high protein whey powder. I have a whole kg tub of this stuff that I cannot use because it gives me pain and bloating. Inulin, is not permitted on the low FODMAP diet for IBS because it remains undigested in the bowel. I am going to have to watch out for it because I found it in my latest yoghurt purchase. Someone recommended Black Swan Greek Breakfast Yoghurt because it is lactose-free and sugar-free yet naturally sweet so I bought some and it gives me bloating and pain. I then checked the ingredients and inulin is listed. I just put another heaped dessertspoon in a raspberry milk smoothie and now I have doubled in size around my abdomen. I have to throw it out. If a starch-avoiding diet helps control ankylosing spondylitis(AS) because the lack of starch leaves nothing for the bacteria that causes AS to feed on then it might help me too with joint pain. Maybe I have that particular strain of bacteria. Who knows, doctors don't test for enough things.
I'd like to get hold of this book talked about in the video
Back to family stuff- S is still in Brisbane. He phoned the second night saying everything was OK but not since then.
The meals were brilliant but I had to compromise my latest tortuous diet. Battered whiting and salad minus the chips with aioli is what I ordered trying to find something that would not compromise a low starch diet too much yet fit in with the lunch specials.
It seems I now have to eat a low starch diet in order to avoid wind and bloating which I've had for so many years or decades that I cannot even remember the start of it. It started with me reading about everyone's fructose malabsorption on the Facebook group and remembering that once upon a time I was told I had a sucrose, maltose and lactose intolerance. It was called a disaccaride intolerance at the time of testing back in the 80's. I had also been discovering that a gluten-free diet helped a little but it certainly wasn't the whole answer. I was always confused about the sucrose intolerance because out of every darn thing I put into my mouth table sugar is about the only thing that I can say does not cause an obvious digestive problem. No pain. No bloating. No attacks. I still love my lollies.
I have had the lactose intolerance taken care of by only eating low-lactose foods and drinking only lactose-free milk. I have tried other milk alternatives and didn't like them but now I find out that they contain starch so that maybe why. Well rice and soy milk do. Almond milk would be fine if I could afford it. I would not drink it now because I am getting enough almonds lately. Almond flour at its horrific price is the only flour that does not contain starch because it is mainly protein. I have been using almonds I had here and blending them into meal and making pancakes and biscuits but rationing them out. They are a bit heavy to eat but better than nothing. I don't get bloated either.
For the most part I have been eating meat, certain vegetables, berries, lemons, bacon, LF milk, chicken and fish. Most fruits have starch, many vegetables including potatoes, peas and corn, all cakes and biscuits and cereals including the gluten-free alternatives. Going without bread, rice, buckwheat (which I was using), potato, and porridge has been the hardest. There is obviously a certain amount of starch that I have to have and will be able to tolerate. I have been OK reintroducing a sachet of porridge or some tapioca pudding but I didn't get away with either the batter on that whiting or the aioli sauce because the day I went out for lunch I had pain and bloating. Up until then I had not had any bloating or glue-like stools. I guess it had been around five days of starch elimination by then. It is really a time-consuming process because package foods are out and it means so much more cooking. I allow myself Kantong Peanut Satay sauce so far. Peanuts are OK. I think Coconut Cream sauces could be OK but I will probably have to make it. Hopefully sweet and sour sauce will be OK too. It is all to do with the thickeners used. In fact I don't know what can be used as a thickener to make sauces that are starch-free. Modified corn starch is just one of the many possible starchy ingredients on most packet food.
Some of the things I remember that I now need to avoid are lactose, high-starch foods (which is all the good stuff), onions of different kinds, probably garlic, sorbitol (as an additive and in fruits), pear juice, wheat, probably gluten and finally inulin. They are putting inulin in everything these days. It is a fibre and I first found it in a high protein whey powder. I have a whole kg tub of this stuff that I cannot use because it gives me pain and bloating. Inulin, is not permitted on the low FODMAP diet for IBS because it remains undigested in the bowel. I am going to have to watch out for it because I found it in my latest yoghurt purchase. Someone recommended Black Swan Greek Breakfast Yoghurt because it is lactose-free and sugar-free yet naturally sweet so I bought some and it gives me bloating and pain. I then checked the ingredients and inulin is listed. I just put another heaped dessertspoon in a raspberry milk smoothie and now I have doubled in size around my abdomen. I have to throw it out. If a starch-avoiding diet helps control ankylosing spondylitis(AS) because the lack of starch leaves nothing for the bacteria that causes AS to feed on then it might help me too with joint pain. Maybe I have that particular strain of bacteria. Who knows, doctors don't test for enough things.
I'd like to get hold of this book talked about in the video
Back to family stuff- S is still in Brisbane. He phoned the second night saying everything was OK but not since then.
Wednesday, August 22, 2012
He left for Brisbane and Starch Intolerance
S has been here since Sunday. I asked him not to come until Monday but still he came Sunday which could have been embarrassing had Jan decided to stay. She was thinking about avoiding the party at her units by staying here but she stayed at home mainly because I wasn't well. Still. Have been sleeping for several hours every day and feeling very unmotivated and heavy to move my body about. I have had a lot of anxiety again like someone flipped the switch back on. It's a horrible feeling.
S was debating (with himself mostly) whether he should go to this share house in Zilmere. He has been talking to himself out loud but in a mumble so I cannot understand what is being said. He was obviously worried sick. That did not help me either. I worry for him. However he had already wired the rent into the owner's account and was not likely to get it back so I thought he should give it a go. By this morning he had decided he was better off going back to Kin Kin because he cannot get ahead paying rent and at his Dad's that isn't much of a problem. If he hasn't got it, he does not have to pay. He's worried about the car too which is just not really roadworthy despite it getting registered.
Either way he was going to be leaving here today and in the end, he decided to go to Brisbane. He sure took his time in getting going until suddenly...."I'm going". I was on edge until he left and then collapsed into bed for a sleep.
I am supposed to be going for a 50th birthday lunch at Bellvista Tavern tomorrow. I think I might be able to go but I bet I have to leave some starch on my plate. I have been having so many gut problems lately that I decided to go on a low starch diet to see if it helps. It has been hard going without bread, rice, potatoes and cereal not to mention other vegetables and living basically on meat, eggs, tomatoes, fish, milk and almond meal. The latter can be turned into a form of biscuit or muffin if you can afford it. No starch to speak of. I made 12 biscuits. I had some almonds and just blended them up into meal. Mixed with oil, bicarb and honey or golden syrup with a few date bits chucked in and baked for 10 mins was quite nice and great when I felt like something heavy but I am relaxing the diet now by introducing some starch. I seem to have gotten away with a sachet of porridge without getting any bloating back but I am still not totally pain-free. It seems to have stopped the extended stomach I get though. So I think I have a starch intake limit that I must not exceed. I ate tapioca and stewed apple today too without blowing up. I can't keep it up just eating meat three times a day though. I lost my appetite for meat quite quickly after the first couple of days. It is also very hard to not have something flat to put things on - to spread avocado on for instance and the only thing I found suggested was melting cheese into crisps. Lots of cornstarch, potato starch, rice flour and other thickeners in so many foods it is a very difficult diet. But so is going maltose-free.
In case you had not noticed, I added some photos to the previous blog.
S was debating (with himself mostly) whether he should go to this share house in Zilmere. He has been talking to himself out loud but in a mumble so I cannot understand what is being said. He was obviously worried sick. That did not help me either. I worry for him. However he had already wired the rent into the owner's account and was not likely to get it back so I thought he should give it a go. By this morning he had decided he was better off going back to Kin Kin because he cannot get ahead paying rent and at his Dad's that isn't much of a problem. If he hasn't got it, he does not have to pay. He's worried about the car too which is just not really roadworthy despite it getting registered.
Either way he was going to be leaving here today and in the end, he decided to go to Brisbane. He sure took his time in getting going until suddenly...."I'm going". I was on edge until he left and then collapsed into bed for a sleep.
I am supposed to be going for a 50th birthday lunch at Bellvista Tavern tomorrow. I think I might be able to go but I bet I have to leave some starch on my plate. I have been having so many gut problems lately that I decided to go on a low starch diet to see if it helps. It has been hard going without bread, rice, potatoes and cereal not to mention other vegetables and living basically on meat, eggs, tomatoes, fish, milk and almond meal. The latter can be turned into a form of biscuit or muffin if you can afford it. No starch to speak of. I made 12 biscuits. I had some almonds and just blended them up into meal. Mixed with oil, bicarb and honey or golden syrup with a few date bits chucked in and baked for 10 mins was quite nice and great when I felt like something heavy but I am relaxing the diet now by introducing some starch. I seem to have gotten away with a sachet of porridge without getting any bloating back but I am still not totally pain-free. It seems to have stopped the extended stomach I get though. So I think I have a starch intake limit that I must not exceed. I ate tapioca and stewed apple today too without blowing up. I can't keep it up just eating meat three times a day though. I lost my appetite for meat quite quickly after the first couple of days. It is also very hard to not have something flat to put things on - to spread avocado on for instance and the only thing I found suggested was melting cheese into crisps. Lots of cornstarch, potato starch, rice flour and other thickeners in so many foods it is a very difficult diet. But so is going maltose-free.
In case you had not noticed, I added some photos to the previous blog.
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| Kings Beach from the headland |
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| Connor Monkey |
Friday, August 17, 2012
Not too good post-virus
I haven't been any good since that last walk to the Currimundi Lake Surf Life Saving Tower with Scott.
Before breakfast at Currimundi Lake I was at the stage that I was able to get out if I was prepared to pay for it with a couple or three down days. I have not got back to that level unfortunately. At first it was the usual post-fun crash but somewhere along the line I decided that the wanting to throw up with dizziness on being upright - even sitting - was a virus making things much worse than usual in the head. The waves of nausea were much more frequent and totally overwhelming as you probably guessed when you saw me sliding down onto the floor from my web-cam chair. I was a bit better the next day from that perspective and that kind of dizziness and nausea has continued to improve but now an overwhelming fatigue has indicated the chronic phase is here. I just hope it does not last for months. Jan had this dizzy and throwing up on standing bug too. She doesn't think she is 100% still but at least she was able to get back out amongst it after a couple of days in bed. Flora said she was not well and was getting really dizzy from standing as well. And then there was the sore throat S had. I have a bit of a sore throat too. And I have had several days of stomach problems ever since having pear juice. I still don't know what to eat and I am not getting enough food I don't think. I made a quick chicken soup for tea but my gut is already burning up to my throat. I think the colonoscopy caused a delayed reaction there too. I wasn't even needing the Losec before the colonoscopy. Not so now.
It seems like I'll never get up to see B and Cohen and I am worried that B (and S) thinks I am not making enough of an effort. He has not really seen how I have deteriorated to the point that I don't get good "weeks" any more. It seems I may have to wait a while longer for a good day too. I know Jan will find it hard to wait because we were talking about a weekend away and she really wanted to organize a BBQ with me down at a park or something. I was hopeful that perhaps after I shook this virus I would be ready to go back to one day on three days off. When I say on - I mean being able to get out for a couple of hours and act normally.
Anyway, I am back to hoping for scooter days instead of walking days but for now I am getting much worse body aches and the blurry eyes are back not to mention the burning that is fairly normal nowdays. I do not want to get to the stage that I am blacking out the windows which I have had to do before. Things are tough.
Before breakfast at Currimundi Lake I was at the stage that I was able to get out if I was prepared to pay for it with a couple or three down days. I have not got back to that level unfortunately. At first it was the usual post-fun crash but somewhere along the line I decided that the wanting to throw up with dizziness on being upright - even sitting - was a virus making things much worse than usual in the head. The waves of nausea were much more frequent and totally overwhelming as you probably guessed when you saw me sliding down onto the floor from my web-cam chair. I was a bit better the next day from that perspective and that kind of dizziness and nausea has continued to improve but now an overwhelming fatigue has indicated the chronic phase is here. I just hope it does not last for months. Jan had this dizzy and throwing up on standing bug too. She doesn't think she is 100% still but at least she was able to get back out amongst it after a couple of days in bed. Flora said she was not well and was getting really dizzy from standing as well. And then there was the sore throat S had. I have a bit of a sore throat too. And I have had several days of stomach problems ever since having pear juice. I still don't know what to eat and I am not getting enough food I don't think. I made a quick chicken soup for tea but my gut is already burning up to my throat. I think the colonoscopy caused a delayed reaction there too. I wasn't even needing the Losec before the colonoscopy. Not so now.
It seems like I'll never get up to see B and Cohen and I am worried that B (and S) thinks I am not making enough of an effort. He has not really seen how I have deteriorated to the point that I don't get good "weeks" any more. It seems I may have to wait a while longer for a good day too. I know Jan will find it hard to wait because we were talking about a weekend away and she really wanted to organize a BBQ with me down at a park or something. I was hopeful that perhaps after I shook this virus I would be ready to go back to one day on three days off. When I say on - I mean being able to get out for a couple of hours and act normally.
Anyway, I am back to hoping for scooter days instead of walking days but for now I am getting much worse body aches and the blurry eyes are back not to mention the burning that is fairly normal nowdays. I do not want to get to the stage that I am blacking out the windows which I have had to do before. Things are tough.
Pulled up in the car at Caloundra Head and heard this.
Tuesday, August 14, 2012
Friday, August 10, 2012
The Lightning Process Nymph
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| Hope Mum gets a laugh |
Thanks to Tom Kindlon I'm feeling much better today after a little brain washing. No, but I was doing some sorting out yesterday which is a step up from spending too much time in bed. I didn't go out on the scooter or anywhere. Played it safe.
The following was provided to me via email from this email digest j.van.roijen@chello.nl
It originally appeared http://bit.ly/S2Fxni weare3forme's posterous
February 23, 2011
The Lightning Process and ME
We are 3 friends who tweet from
@WeAre3ForME in honour of our friend
with severe ME.
Our friend, let's call him X, has been ill
for 8 years now after catching a virus.
X wanted to tell of his experience of the
Lightning Process, after the coverage in
The Times yesterday.
In the 3rd year of being ill, X was under
pressure from family to try the Lightning
Process. Since they offered to pay, he
agreed to it, thinking that it would be
worth a shot if it had worked for other
people. He describes himself as having
moderate-severe ME back then.
Before you go on a Lightning Process
course, you have to sign a form saying
you won't disclose the actual details of
what the Lightning Process actually is.
They say that this is because it is a 3
day course and it needs to be explained
properly. So we can't say what it
involves exactly, but suffice to say, X
says it actually could be explained in
5-10 minutes.
X was with a trained practioner, who
confirmed that X had learnt the process
properly and was doing it correctly.
Basically it was a type of brainwashing.
They tell you that you're not allowed to
say that you're ill anymore or that you
have any symptoms. They force you to
ignore the symptoms because they say
that the symptoms don't really exist.
They force you to do activities even
though it's making you really ill, but
you're not allowed to say so.
They are very good at getting vulnerable
patients to believe all of this. They
dress up all their explanations and make
it sound like science.
X was so desperate to get better so
started to do more and was gradually
increasing his activity, all the while
practising the Lightning Process.
He was getting more and more ill but he
thought he just had to keep practising
the Lightning Process and things would
improve.
His body was becoming more and more
damaged by the activity. To cut a long
story short, a few months later, X was
in hospital bed-bound. He kept on
blacking out if he tried to do anything at
all.
Doctors found it odd that he kept saying
that he wasn't ill at all. He could barely
move yet he kept saying that there was
nothing wrong with him. That's how
deep the brainwashing was.
Thankfully, a very wise doctor snapped
him out of it.
The doctor showed X PET and SPECT
scans of X's brain (commonly abnormal
in ME patients). The doctor showed him
X's cardiomyopathy (also common in ME
patients). Confronted with these facts,
X finally realised the extent of the
brainwashing.
This is what he wrote soon afterwards:
"I feel like I have come out of a daze - I
think I was brainwashed by the lightning
process. Part of it was that I wasn't
allowed to say or even think I was ill, so
there I was telling everyone that I was
feeling better when I was actually
feeling so ill. It was all an act.
It's all a bit confusing now really. How
could I have fallen for it, hook line and
sinker? I'm cross with myself that I
actually believed some of the lightning
process stuff - I guess I was just so
desperate to get better.
I still get angry when I even think of the
Lightning Process. It has made me
bedbound, when before I was merely
housebound. I am so angry that even I,
who has a degree in Physics, could be
this hoodwinked.
They are very subtle and clever at what
they do and prey on vulnerable patients
who would do anything/ believe
anything in order to get better."
This is the reality
The Lightning Process Cures Piles
Thursday, August 09, 2012
Every Morning I wake with high hopes
Every morning I wake with such high hopes. Well, maybe they are not "high" hopes if I compared them with yours but they are hopes of what I may be able to do that day. Most days my hopes are not realized and today looks like it is going to be another let down. I just dusted and moved the printer a couple of feet - no more than a metre. My body is already saying "That's enough thank you" and I am beginning to doubt if I will be able to have a shower and then get out on the scooter some time today. They were my hopes for the day because I have been getting a little better each day I rest and I have already missed out on a BBQ with Jan and Mandy. I thought that by today, my time had come. You just cannot tell when you first open your eyes and all the hopes flash through your mind. It can seem quite feasible while you are still horizontal in bed after a good night's sleep and you scan your body as to how it feels. Getting up is usually enough to send those hopes packing but today they lasted a bit longer which in itself is a good sign.
I have been getting that "faint" feeling every day since I went for a short stroll last Saturday with S. I have been feeling like I want to pass out and my stomach gets nauseous at the same time as the sounds in my ears seem to echo and ring. I don't even have to be on my feet. Sitting upright has been enough to make it happen so that my habit of sitting in the garage in the sun or at the front door in the sun has not been possible for long. Similarly the desktop computer. I can only hope this post-exertion response is worse than usual not because it has now become the norm but because S has been quite sick with a sore throat ever since he arrived which could mean that my body is fighting to stabilize two things rather than just one. I have not caught his bug per se. I have had a lot of mucous in my head that I can blow out in the morning and that's about it. Last night my throat was a bit stingy though.
He left for home late yesterday afternoon after doing a bit of pruning for me. So far he seems quite "normal" and maybe it is a positive response to Effexor. He has a two week trial of samples but that's all unless he goes back to the doctor who was a one off. He changes doctors like he changes email addresses, phone numbers and living arrangements.
Next week he plans to go to live in Brisbane at another share house. It is a good price. He has not been officially accepted yet though so he could be living in hope just like I do. He felt good about an interview with Canon Printers in Maroochydore he had on Monday but it means being short-listed and re-interviewed. He is also catching the train to Brisbane on Friday for an interview with Chrome Real Estate (or some such name). The good thing about that last one is that it pays a weekly wage and not just commission.
I feel a little less "heady" sitting down writing this but my best chances of getting a longer run at pottering around the house would be if I would just go back to bed an lie down. The sun is gloriously shining and it is the last thing I want to do but I think I will grab ten minutes horizontal at least and keep hoping for .....later.
I have been getting that "faint" feeling every day since I went for a short stroll last Saturday with S. I have been feeling like I want to pass out and my stomach gets nauseous at the same time as the sounds in my ears seem to echo and ring. I don't even have to be on my feet. Sitting upright has been enough to make it happen so that my habit of sitting in the garage in the sun or at the front door in the sun has not been possible for long. Similarly the desktop computer. I can only hope this post-exertion response is worse than usual not because it has now become the norm but because S has been quite sick with a sore throat ever since he arrived which could mean that my body is fighting to stabilize two things rather than just one. I have not caught his bug per se. I have had a lot of mucous in my head that I can blow out in the morning and that's about it. Last night my throat was a bit stingy though.
He left for home late yesterday afternoon after doing a bit of pruning for me. So far he seems quite "normal" and maybe it is a positive response to Effexor. He has a two week trial of samples but that's all unless he goes back to the doctor who was a one off. He changes doctors like he changes email addresses, phone numbers and living arrangements.
Next week he plans to go to live in Brisbane at another share house. It is a good price. He has not been officially accepted yet though so he could be living in hope just like I do. He felt good about an interview with Canon Printers in Maroochydore he had on Monday but it means being short-listed and re-interviewed. He is also catching the train to Brisbane on Friday for an interview with Chrome Real Estate (or some such name). The good thing about that last one is that it pays a weekly wage and not just commission.
I feel a little less "heady" sitting down writing this but my best chances of getting a longer run at pottering around the house would be if I would just go back to bed an lie down. The sun is gloriously shining and it is the last thing I want to do but I think I will grab ten minutes horizontal at least and keep hoping for .....later.
Sunday, August 05, 2012
He can get his license back
Alcohol Ignition Program
B can get his license back now. He has done the time, paid the fine, for the second time. However there's a catch he did not know about. I had not heard of it either. In order to drive the car, it has to be fitted with a breathalyzer. He has to pay for that and then rent it at $150 a month for the next twelve months. It is part of getting an I license which he will have to display for 3 years. You have to pay for that. It is going to be a couple of thousand dollars so I gave him a whole $50 for his 29th birthday on Friday. I think the idea of having him or anyone else blow a clean breathalyzer before the ignition will work on the car is great. I am not sure if it need be that expensive. It could feel "out of reach" to many unemployed because of the expense and if it is not used because many can't afford it then it can't be used to train people can it? It can also be used as an excuse not to get a job. I thought B would have been more likely than anyone to say, forget it, I'll go without a license. He went without a car license for years and then without a car. But he has his eye on working at an engineering works in Maryborough which is 20 minutes away (I reckon it was longer than that when we went to HB). He needs a license and he obviously has Stac's blessing to have the car fitted because it sounds like he plans to do step one as soon as he has the money. To get the setup costs he is planning to do the jobs that people want him to do back at Kin Kin with Roger no doubt doing the travelling. There is nevertheless a train for most of the journey. They can sort it out.
I'll write about what Dr Jo said about what tests were done another time maybe but she was no help; her recommendation of pear juice for constipation I'll tell you now.
S drove straight back down as soon as the cab ute was registered. He begged to move in again but this time just for a month. He has something due for Uni tomorrow and he needed the Internet so here he has been since Thursday. We lock horns then go our own separate ways again in between some pleasant stuff. It is not all bad but I am sure he costs me more than I can afford the energy to be vigilant about. I'm mainly speaking about leaving lights on and heaters going. I can't be vigilant because I spent my energy seeing Connor on Friday night and taking S to Currimundi for breakfast yesterday morning. By the time I had walked back to the car from checking out the ocean I knew I was in for some serious payback. It was a path walk, not even sand mostly. So short, broken by a sit-down while admiring the ocean and soaking the sun. But now I keep feeling like I want to pass out once I have spent too long upright. Even sitting at the computer; so I have been mainly in bed ever since I got home yesterday morning. The same thing happened after seeing the doctor. It's the same story. Not realising how little energy I had left in store. Not spending enough time saving up energy. Over and over. And all doc Jo could say is that I was deconditioned and needed to work up gradually. Wow, she's a big help. She also said take Losec again and forget about the IBD clinic's FODMAP diet, gluten and eat what I like. The Losec is for the gastric inflammation that was found but there is no explanation as to why it is there or why they call the same lump three different names. She doesn't care enough to even offer me the serum coeliac test or for once just work at nutting something out together. I really care about the post-entertainment fainting and I wish someone else would.
Dr Jo has no idea if I was tested for Whipple's disease.
B can get his license back now. He has done the time, paid the fine, for the second time. However there's a catch he did not know about. I had not heard of it either. In order to drive the car, it has to be fitted with a breathalyzer. He has to pay for that and then rent it at $150 a month for the next twelve months. It is part of getting an I license which he will have to display for 3 years. You have to pay for that. It is going to be a couple of thousand dollars so I gave him a whole $50 for his 29th birthday on Friday. I think the idea of having him or anyone else blow a clean breathalyzer before the ignition will work on the car is great. I am not sure if it need be that expensive. It could feel "out of reach" to many unemployed because of the expense and if it is not used because many can't afford it then it can't be used to train people can it? It can also be used as an excuse not to get a job. I thought B would have been more likely than anyone to say, forget it, I'll go without a license. He went without a car license for years and then without a car. But he has his eye on working at an engineering works in Maryborough which is 20 minutes away (I reckon it was longer than that when we went to HB). He needs a license and he obviously has Stac's blessing to have the car fitted because it sounds like he plans to do step one as soon as he has the money. To get the setup costs he is planning to do the jobs that people want him to do back at Kin Kin with Roger no doubt doing the travelling. There is nevertheless a train for most of the journey. They can sort it out.
I'll write about what Dr Jo said about what tests were done another time maybe but she was no help; her recommendation of pear juice for constipation I'll tell you now.
S drove straight back down as soon as the cab ute was registered. He begged to move in again but this time just for a month. He has something due for Uni tomorrow and he needed the Internet so here he has been since Thursday. We lock horns then go our own separate ways again in between some pleasant stuff. It is not all bad but I am sure he costs me more than I can afford the energy to be vigilant about. I'm mainly speaking about leaving lights on and heaters going. I can't be vigilant because I spent my energy seeing Connor on Friday night and taking S to Currimundi for breakfast yesterday morning. By the time I had walked back to the car from checking out the ocean I knew I was in for some serious payback. It was a path walk, not even sand mostly. So short, broken by a sit-down while admiring the ocean and soaking the sun. But now I keep feeling like I want to pass out once I have spent too long upright. Even sitting at the computer; so I have been mainly in bed ever since I got home yesterday morning. The same thing happened after seeing the doctor. It's the same story. Not realising how little energy I had left in store. Not spending enough time saving up energy. Over and over. And all doc Jo could say is that I was deconditioned and needed to work up gradually. Wow, she's a big help. She also said take Losec again and forget about the IBD clinic's FODMAP diet, gluten and eat what I like. The Losec is for the gastric inflammation that was found but there is no explanation as to why it is there or why they call the same lump three different names. She doesn't care enough to even offer me the serum coeliac test or for once just work at nutting something out together. I really care about the post-entertainment fainting and I wish someone else would.
Dr Jo has no idea if I was tested for Whipple's disease.
Wednesday, August 01, 2012
Biopsy Results
Something really annoying seems to have happened over my recent endoscopies. As far as I was concerned Dr Peter Nash was the referring physician. The only reason I ended up under anaesthetic was because he wanted me tested for Whipple's disease and he seemed to be concerned about the pain in my right side I was nursing that day I saw him and he wanted to rule out small-bowel Crohn's before he treated me for anything muscular-skeletal. That was how I thought it all started. I have a copy of the referral. The Colonoscopy was added when I went to the IBD clinic which changed the waiting time from priority one to three months waiting list because I was now getting both ends done. As far as I was concerned, the top half belonged to Dr Peter Nash's referrals and it was in the biopsies done at his end that I was particularly interested in. But it seems only Jo English (who I have not seen all year if I remember rightly) has had a copy of the results. I only just found that out. She is stated on both procedures as being the referring physician. I am now starting to wonder if I was even tested for Whipple's disease and I wonder if I will ever find out if she does not even know the name of the test stain that needed to be done. All I know now is that all my biopsies have been marked NO ACTION REQUIRED. There you have the result but you don't have an explanation. I don't have an explanation. I don't have any useful information.
Here is the endoscopy report for which I don't have any explanation.
That "single gastric polyp" I would have to assume is the same lump that they have re-labeled from GIST to pancreatic rest to now a sessile gastric polyp. All I know is the biopsy requires no action which means it is not cancer but it looks like I am not going to get told what tissue they found in there or whether it has grown in size compared to the years before. This is all because I am not getting to see the gastroenterologist himself. At least after the RBWH procedures I was referred back to a gastro. Now days all I ever see is a nurse practitioner. I am getting lost in the system.
What about the cause of the gastritis (the erythema of the mucosa of which there is a photo above)? OK, the biopsy says it has not become cancerous but why is it burning? What is the irritation? Well from the results of NO ACTION REQUIRED we can assume it is not coeliac disease. But what about the rest of the information I need? Was I even tested to find out if sucrose or gluten intolerance (as opposed to allergy) was even a potential cause for the redness. Was I tested for any bugs besides Whipples assumping one of them was even for Whipple's? I tried to ask that surgeon for those intolerance tests before I went under - I certainly mentioned gluten intolerance distinct from coeliac but without knowing if I was tested for it - specifically Anti-gliaden antibodies, I still don't know if I am in the all-clear to eat wheat etc. That to me would have been useful information. Do I still have a maltose intolerance?
Everything else has changed. Those bleeding angioectasias have not returned after getting sealed up. No sign of them was mentioned in the report. The inflammation in my esophagus from other years is gone but the gastritis that had disappeared is back again. There is absolutely no sign of Crohn's disease in the only biopsy they took of my colon either because the results are NO ACTION REQUIRED yet I have had a distinct change in my bowel problems in the last two years with its tendancy to back up. I blamed the doxycycline when it first started happening but it did not stop. But the report on my colonoscopy was mostly unremarkable (an internal hemorrhoid and a negative biopsy of my rectum). If you did not look at the section discussing the procedure, an interpreting GP honing in on the summary results may fail to notice one important sentence - "The colonoscopy was performed with difficulty due to significant looping". So, why have I got looping all of a sudden? No other colonoscopies have ever mentioned it? It certainly is an explanation to me of why things seem to get stuck these days. I remember when all I ever complained about was diarrhea. Things change. I don't get those mini fevers (rises in temp) I used to get either so somehow I beat Crohn's disease. But I have IBS so badly that I am often just as handicapped by it. Like the days I cannot even put clothing next to my stomach skin that might happen to press a touch that results in cramps.
Bottom line, I am glad I don't have cancer. I don't know why my stomach is inflamed (except that I have stopped taking the Losec remember?) When I know what I was tested for I will maybe know more about what I haven't got. Like I said, I would really like to know what foods are not going to irritate. I am going to see Dr Jo English my "referring" GP tomorrow but I already fear she will not enlighten me much.
Here is the endoscopy report for which I don't have any explanation.
No gross lesions in oesophagus.
Gastric mucosal abnormality characterized by erythema (that means red and inflammed). This was biopsied.
A single gastric polyp. This was biopsied.
No gross lesions in duodenum.
Biopsies were taken with cold forceps for evaluation of coeliac disease.
That "single gastric polyp" I would have to assume is the same lump that they have re-labeled from GIST to pancreatic rest to now a sessile gastric polyp. All I know is the biopsy requires no action which means it is not cancer but it looks like I am not going to get told what tissue they found in there or whether it has grown in size compared to the years before. This is all because I am not getting to see the gastroenterologist himself. At least after the RBWH procedures I was referred back to a gastro. Now days all I ever see is a nurse practitioner. I am getting lost in the system.
 |
| In the gastric Fundus |
What about the cause of the gastritis (the erythema of the mucosa of which there is a photo above)? OK, the biopsy says it has not become cancerous but why is it burning? What is the irritation? Well from the results of NO ACTION REQUIRED we can assume it is not coeliac disease. But what about the rest of the information I need? Was I even tested to find out if sucrose or gluten intolerance (as opposed to allergy) was even a potential cause for the redness. Was I tested for any bugs besides Whipples assumping one of them was even for Whipple's? I tried to ask that surgeon for those intolerance tests before I went under - I certainly mentioned gluten intolerance distinct from coeliac but without knowing if I was tested for it - specifically Anti-gliaden antibodies, I still don't know if I am in the all-clear to eat wheat etc. That to me would have been useful information. Do I still have a maltose intolerance?
Everything else has changed. Those bleeding angioectasias have not returned after getting sealed up. No sign of them was mentioned in the report. The inflammation in my esophagus from other years is gone but the gastritis that had disappeared is back again. There is absolutely no sign of Crohn's disease in the only biopsy they took of my colon either because the results are NO ACTION REQUIRED yet I have had a distinct change in my bowel problems in the last two years with its tendancy to back up. I blamed the doxycycline when it first started happening but it did not stop. But the report on my colonoscopy was mostly unremarkable (an internal hemorrhoid and a negative biopsy of my rectum). If you did not look at the section discussing the procedure, an interpreting GP honing in on the summary results may fail to notice one important sentence - "The colonoscopy was performed with difficulty due to significant looping". So, why have I got looping all of a sudden? No other colonoscopies have ever mentioned it? It certainly is an explanation to me of why things seem to get stuck these days. I remember when all I ever complained about was diarrhea. Things change. I don't get those mini fevers (rises in temp) I used to get either so somehow I beat Crohn's disease. But I have IBS so badly that I am often just as handicapped by it. Like the days I cannot even put clothing next to my stomach skin that might happen to press a touch that results in cramps.
Bottom line, I am glad I don't have cancer. I don't know why my stomach is inflamed (except that I have stopped taking the Losec remember?) When I know what I was tested for I will maybe know more about what I haven't got. Like I said, I would really like to know what foods are not going to irritate. I am going to see Dr Jo English my "referring" GP tomorrow but I already fear she will not enlighten me much.
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