Easter Sunday I back into Tina's car

I went to pick up B at 5am.  Two cars parked on their side of the drive.  Fogged windows.  Concentrating on the big tank of a car.  Bang.  I'm devastated.  All before the Easter Bunny is due.

Pick up B - he smells like a brewery.  But I'm sobbing out a year's full of tears over the next hour and low and behold, they climb into bed and just forget about the work that St has to be at by 8am.  She knew she would fall asleep.  But she did not ring to let work know.  In fact it seemed to suit her this time that Brett should not drive after a night on the Midori (mine).  The night before it was tinned premix as a primer before the club at midnight. B bought Yager Bombs so I am told.  Drink triggers off St's paranoia and for B it just mellows him.  He can drink an awful lot without actually getting drunk but he likes feeling "maggot-faced".  All you ever see in his party photos is him acting like it - poking out his tongue - thinking he's having a good time.  So, I was the chauffeur during the day Saturday in case he was still over the limit and I got to drive the new car.  It lacks a little on the uptake and needs a paint job on the roof.

I waited around for them to get out of bed - pruned the tree at the front letterbox which got me out of being teary; and wiped the black stuff off my rear side bumper bar which turned out to be a rubber strip on her car; doing this all while craving sleep but too wired to do so.  I was shaking.

I think Cohen woke them up again about 8.30am and the eggs Daddy bought for the Easter Bunny to leave were sitting there waiting but it wasn't something he was waking up with exitement for.  Too young.  St didn't really start thinking about getting Cohen something from the Easter Bunny until she got back here yesterday after 12 hours of unexplained absence but she certainly would not walk down to the shops even if B hadn't have mumbled "I got him something".  "Oh but I wanted him to have that big bunny one - complain, complain."  Cohen got enough.  See for yourself.

Happy Easter - they're gone - back to the relatively uneventful life they have in Gympie - all playing some computerized gadget or game in their own private worlds but together as some sort of family.  Cohen is going to fit in nicely by the looks with his "tendo". Translated Nintendo DS Lite.

Easter 2011

They arrived Good Friday after umming and arhing about it.  They left Gympie while I was having a quick dip at the local beach so I did not know they were actually coming for sure.  I was actually told to wait for another phonecall confirmation but I had waited and was not going to wait any longer.  I then went visiting and came home to find them here actually feeling pretty sure they would not come at all since it was so late in the day by then.  I missed seeing the message on Facebook because I was nowhere near the computer. 

The rest of the day went well, B bought Hungry Jacks for tea and then the drinking began.  They had until midnight before the club would open because it was Good Friday.  So there were all these mini dramas going on between him and her about involving a freind Lakota in the night but he would not return their calls.  It simply should have been a case of - he's not keen tonight but St was determined to try and find out why Lakota lied about losing his phone using it as an excuse not to have gotten their original message or missed call.  I won't explain it all.  Everything is just so childish but mostly based on St insecurities and she is plagued with them.  Someone with that many insecurities should not drink to get drunk because although the night club started off being fun, it did not end up that way and it turned into vengeance after B was seen "dirty dancing" with a girl while she meanwhile was chatting up other people.  I don't need to know any more.  Things just went from bad to worse between B and St and B said that he was coming back and called a taxi.  She didn't want to leave although the club was shut and they were only milling around the front of it.  While in the taxi, Br cruised past again and gave St a second chance to come home but she didn't take it.  He came home and went to bed.  He woke me when he came in and I was told the story.  He seemed to take it in his stride and said that she'd come home when she was ready.  Back to bed.

Cohen woke us up at around 8am.  Naturally B had not had enough sleep so it was a slow start to Easter Saturday.  I mucked around with Cohen a bit and made him a hot-cross bun which he liked but mini one was enough.  He seemed to prefer my chewable vit C next.  Come to think of it, he hardly ate any decent food and with both parents suffering the morning after blues, they did not have a meal all day.  Cohen did eat the chocolate Easter egg I gave him. 

Easter Present from Nanoo (early because they were not meant to be staying Easter Sunday)

He loves chocolate unlike Connor at the same age who only wanted the smarties out of the middle of the egg after the first bite of chocolate.  I had no fruit or anything for him except Powerade mix which everyone drank as fast as I could make a new batch.  It's all gone now.  Must get some more.  Am still using isotonic drinks to help with dizzies and low blood pressure but I am going to have a go at making my own.  I bought some potassium chloride.  But my blood pressure was not low this week anyway.  B and S both have spot on blood pressure around the 100 over 70.  Cohen screamed with fright when the arm band started moving even though he had been playing with the buttons.  There was no way he would put that thing on his arm.

On the way to recover Mummies handbag

One of the reasons they came down was to go to the beach Easter Saturday before leaving for home later in the day.  Stacey had to work Sunday.  But she wasn't back and we got really worried when B got a phonecall from St phone but the speaker on the other end was not St but the owner of the nightclub who had found the bag and all its contents plus her shoes out the front the previous night.  B asked me to drive them to pick it up and we got ready for the beach as well.  I was not going to let Cohen miss out on that!!!!!

Don't want to take my nappy off

 

I think all of us had fun at the beach despite B and I being pretty put out by St lack of appearance, the handbag incident and finding out that the police had no record of her being picked up.  They said to me "She has not been in our company for some time".

More to come

Time for a cry

Once-in-a-lifetime adventure



That was 1994.  And yes I was giggly with nervousness.  My life was better back then but my soul is better now. The feeling of free-fall was like being able to fly.  It did not feel like falling. I had an urge to learn astral travelling after this one-off experience of knowing what it was like to fly.

It is a real shame that the Darling Downs in Queensland AU was going through drought at the time.  I could not see a stick of green.  Maybe that is not as bad as not being able to see the view properly anyway because I lost my glasses as we did an almighty tumble out of the plane.  I was hoping for a belly flop.

Let me tell you a cfs/fibromyalgia secret......neruological problems seem to cause disorientation and dizziness.  So I hated the tumble part.  I had no idea where I was in space and if I had not been tandem I wonder if I would have ever been able to snap out of that disorientation in time.  Somewhere after 1994 I had the same horrible sensation from waltzing.  So I gave up anything that involved even slow spins in dancing.

After the tumble when my glasses (and Paraventure's goggles) flew off and upward, flattening out into flying mode was fantastic.  The air was palpable and small hand movements could direct your flight.   Yes, you can steer up there!!!

Hanging under the parachute was not as sensational to me.  That feeling of dangling was not exactly comforting but it was a good opportunity to catch up on the view.  I am glad my instructor let me rest my feet on top of his.  It was nicer to have a firm base.  The jump was over so quickly even from 12,000 feet up.  I would do it again if I had a million bucks but I won't be bleaching my hair like that again.  I was trying to live it up at the time (mid-life crisis)  - I was a recycled single again and thanks to Barry for introducing me to a once-in-a-lifetime experience.

Those gorgeous HUGE glasses were actually returned to me from someone's backyard 2km down the road.   I've still got them hoping that they will come back into fashion.

The other part of the video is my friend jumping.

COHEN'S BIRTHDAY AND ECHO CARDIOGRAM DAY

A, whoozy, wobbly, lead-leg day with a thumping heart it is.  I woke up feeling better though this morning and it lasted an hour.  B rang up when they got the parcel I sent and let him open it while I was on the phone but he did not talk at all.  The funny thing was that I thought I ordered a game for his new Nintendo DS Lite but it turned out to be a Go Diego Go DVD which he wanted to watch there and then - but I am starting to doubt my sanity.  I even knew what the game was supposed to do.  How I turned it into a DVD order I have no idea.  As it turns out it does not matter but it made it an expensive DVD.

The ECHO was the last thing I felt like doing this afternoon and I have not got the report but I got the film and a CD with pictures and video.  They even had free wifi at the imaging place.  First time I have seen anything free around here outside Macca's.

I have no idea which picture or video showed it but the man who did it said something about extra pressure in the pulmonary valve and although the others have said it is benign, he seems to favor the original diagnosis I got back when I was 21 of pulmonary stenosis - a valve problem.  He said I had a very slight leak in the mitral valve but that didn't really count.  I guess this means going back to a cardiologist again.  My appointment to get the results of this and the last blood tests and to tell me where to go next is on Friday now because I was asked to reschedule from Thursday because Fleur is home with sick kids and Craig and she have swapped over days.  She was away only a week or so ago with sick kids.  It is a wonder I don't catch something from her!!!

There's plenty more but I think there are enough posted here for safe keeping.  Just need to invite a cardiologist to view this page.  Anyone know a free online cardiologist with a passion for pictures?

He's been robbed $25
He just phoned from work looking for money which at the moment is a place called:  

  Aquisitions advertising and marketing for the promotion of the sale of your business.

W:  5479 1234

M:              0408 865 076      

E:    Email

Shops 2 & 3 Ocean Central. Cn'r Ocean S't and Duporth Ave Maroochydore QLD, 4558

P.O. Box 567, Maroochydore, QLD, 4558

He says he will have to move again because the money was in his wallet at home.  He said they were wankers there which is not what he said last time.  He said it was going to be OK this time.  He is very happy with work and I have tried to collaborate with him through Google Docs in an effort to help with his latest assignment but it seems I make that too complicated too.  He asked for the proof read.  I did not really want to do it.  I have been really ill again (or is it still?).  It seems he is doing a tertiary prep subject which I guess is designed to teach him how to be a tertiary student...referencing, research basics, assignment formatting and in this case summarizing. In an age past I used to tutor this sort of thing.  Here is what he gave me to proof read

OUA Assignment Cover Sheet

An Assignment Cover Sheet needs to be included at the front of each assignment submitted.

Address details

Address: 6 Burwood court

Kuluin, 4558

Assignment details

Unit code: SSK10

Assignment no. 2

Extension due date (if applicable): Fri 15th April 2011

Assignment topic (as stated in the Unit Information Booklet): Assignment 1 Short Essay : Discuss roles and

responsibilities of students and lecturers.

Unit name: Tertiary learning strategies

Applied Energy

Tagashira*,N & Senda,Y 2011, ‘What information should be provided in communications on biomass power

generation’, Socio–economic Research Centre, viewed 24 March 2011, 30 June 2010, accepted 7 January 2011,

.

Assignment summary, 

This paper is to distinguish the appropriate information to be given to untrained people in Japan to

further their knowledge of Biomass generation. To promote the development and way electricity is

used when generated from renewable energy sources. Support schemes like the renewables portfolio

standard and other green power programs have been introduced. Coming up with the necessary costs

involved and benefits of those schemes, people need accurate information in regards to the features

of renewable generation. The method used was a two stage “mental model” the technique was to

perform open ended interviews and a questionaire survey to show peoples understandings when it

came to Biomass generation. From these results it showed that the information to be given to the

population should incorporate the subsequent: (a) Definitions of biomass and biomass generation,

(b) specific generation technologies, (c) the carbon neutral concept of biomass, (d) non use of energy

food crops in Japan, (e) Sustainable availability of resources under certain conditions and (f) High

generation costs with their causes, such as collection costs of resources. (Tagashira*& Senda 2011, P.1)

Open ended interviews was the first of the method used from the two stage “mental model” -

this consisted of 30 recruits ages 30 – 58 who meet the requirements from a screening process

narrowed from 4173 residents in the Tokyo Metropolitan area. Bias was eliminated and the

interviews took place from February 10-20, 2007. Results consisted of questions derived from the

following: Biomass, “knowledge”, Biomass power generation “Knowledge”, Resources for electricity

generation, Generation technologies, Advantages and disadvantages. What the respondents believed

about the topics was then used in the Questionaire survey.

Respondents of the questionnaire survey came from a consumer panel of a different research

company. A screening process was conducted and eventually 20,531 meet the criteria, some groups

were taken and the questionaire completed. The majority of questions were designed to examine

whether peoples responses in the interviews were wide spread. The responses were discussed and

summarized and articulated graphically and the information was discussed to be provided to the target

audience. Still there is more work to be completed to develop messages on biomass generation on the

basis of results shown also finding easy ways to express difficult parts of biomass generation to the

audience. (Tagashira*& Senda 2011, P.8)

Article abstract,

In order to promote the production and use of electricity generated from the use of renewable

energy sources, support schemes such as the Renewable Portfolio Standard and various green power

programs have been implemented. When evaluating the costs and benefits associated with those

schemes, people need accurate information about the characteristics of renewable generation. The

objective of the present paper is to identify the kind of information to be provided to lay people in

Japan in order to enhance their understanding of biomass generation. We use the two-stage “mental

model” method to conduct open-ended interviews and questionaire survey to reveal people’s

beliefs about biomass power generation. From the survey results, it was identified the information

provided should include the following: (a) definitions of biomass and biomass generation, (b) specific

generation technologies, (c) the carbon neutral concept of biomass, (d) non-use of energy crops in

Japan, (e) sustainable availability of resources under certain conditions, and (f) high generation costs

with their causes, such as collection costs of resources. (Tagashira* Senda 2011, P.1)

I hope you can understand it because it is all too hard for me with M.E. degenerating brain.  Actually I was feeling a bit better this morning and I got a load of washing done and out and hair-washing before QBuild contractors came to paint the door they replaced yesterday.  They must have an injection of funds because they did Flora's too and I heard Karla had a new door and they finally came and removed the stump in the backyard too.  There is more talk about the asbestos fence being removed but Brian next door has to approve and luckily he will agree to nothing less than a solid colourbond fence.

I am vibrating again now with that strange feeling inside and the fluttery heart so here I am sitting my life away again.  At least I am not confined to bed - only sometimes.  It's a pity I won't be well enough for Cohen's gathering for his birthday but I am having a heart ECHO tomorrow anyway and an appointment with Fleur again on Thursday.  I was in a morbid mood last night and made this video.

Doctor Fleur Again - mouth


I have been having bowel problems more frequently.  I am going through my third bout of severe gut pains and cramps this year.  Unfortunately the Prednisolone tablets got me backed up with constipation so that any cramping was not very effective but still just as painful.  Luckily that changed today so that I got rid of heaps but the cramps have left me sore inside - feeling bruised.  I am therefore now vulnerable to cramping up on eating but I have been OK with last night's tea so far.  I am taking digestive enzymes at the moment with a main meal.

I was too ill to get to the doctor yesterday as scheduled.  I was overcome with weakness and fatigue and that internal shaking but I think the Prednisolone gave me a false sense of energy so that I over-did it around the house the day before.  It was nice at the time though.  I also started getting those toilet urges so there was no way I was going to risk not having one nearby.  I postponed the appointment until today.  Dr.  Fleur is still relatively easy to get into see within 24 hours and according to her I should have come back with my swollen mouth and burning gums rather than put myself on Prednisolone.  I got rapped over the knuckles but no-one understands how hard it is for me to get to the doctor and the amount of energy it takes and the relapse it causes.  It is natural that I just want to stay in my comfort zone at home where I have a better chance of living in some form of equilibrium or homeostasis.  I already had the Prednisolone at home and I wanted to see if it would help the mouth which in turn could lend more evidence to my theory that the mouth pain and lip swelling is Crohn's disease.  It has not gone away completely but it is such a relief in comparison.  So Fleur gave me a schedule to get off it over the next few days reminding me not to be tempted to take it again with the tablets that would be left over ....because it is "a nasty drug".  Again I felt like a naughty girl.  Yet Dr. Herd was happy for me to have another trial but at that time, I declined the offer.  So you can see why I felt like I had the choice to even use the Prednisolone short-term.  She says 20mg is a "high" dose though.  Without the Prednisolone, I fear that the mouth and now the gut too will get worse again.

Dr Fleur was more concerned with my heart.  She has been monitoring my heart murmur and noticed how bad it was yesterday.  I have been feeling peculiar with light flutterings but was not able to locate its source as my heart.  To me it was just as likely the wired feeling that comes with Prednisolone combined with the fluey shakey feeling inside that I am all too familiar with that makes me feel so weak and has me walking at a snail's pace.  Unlike the day before when I was buzzing around the house (in between sitting ofcourse).  I complained about all the different heart diagnoses I have had over the time but insisted that it was benign according to all the tests I have had so far.  I had an ECHO a couple of years ago along with a halter monitor with Dr. Boga at Nambour Public.  He offered me Metrol to regulate the palpitations that were non-stop at the time but said it was my choice whether to continue with it.  It barely had an effect on the heart palpitations so I stopped taking it after a couple of months.  The strong palpitations continued until the following year relentlessly but quite quickly from that point eased off and stopped except for the odd one here and there which I take no notice of.  They have been more obvious lately but still nothing like they were back then.  Despite already being given the all clear with my heart, she wants me to have another ECHO which I will just get at an imaging place next week.

Fleur also wanted the same old blood tests again.  The lymphocytes were elevated 2 weeks ago.  I had the blood test yesterday after the doctor's appointment and I am to go back to see her on Thursday.  She thinks my mouth improved because of the B12 injection but I don't.  I think it improved because of the Prednisolone.  As for the itches, she still thinks it was probably the Plaquenil and this time she gave me the choice to either stay on it at this lower dose or stop it completely.  I think I will stop it for now (again) and for longer than a week.  I may well miss it but it does not seem to be helping during this flare up.  I was more inclined to see its use for me as something to take as a relapse preventative but not at the expense of itches, hives or mouth burning and lip swelling.  Not that I suspect the Plaquenil of the the mouth symptoms but stopping it will let me know if the lips go down or not in response to cessation especially now that I have to stop the Prednisolone.  Once that is sorted out, I think I would like to try it again.  Sometimes it is better to leave well enough alone though and so far all these drugs for the last three months and more have been more confusing with their added side effects.  It is really hard to pull the benefits out of that.

The next thing Fleur wanted to check out was the Crohn's disease.  If it really is in the mouth, a gastro might want to do a mouth biopsy she said.  I suspected that.  Then I had to make a choice about going public or private and public it must be because of the costs of the procedures which will probably include another colonoscopy and gastroscopy.  That is why I cannot just take myself off to any private diagnostician like my Mum wants me to do.  They do very expensive tests requiring anaesthetic costs as well.

However, the last thing I want to do is go under an anaesthetic for colonoscopies when there is never anything to show for it on the surface mucosa - well not since the original ulcer thing in the sigmoid colon.  Anaesthetic rebound has put me into long-term relapses and I really do not think my body could handle that right now.  It is the last thing I want to do and it will be the first thing a gastro up at the public hospital will want to do if they suspect Crohn's.  I will agree to a mouth biopsy though if it is still flaring by the time I get in unless that requires a general twighlight anesthetic too.

It does not seem that long ago that I was in RBWH having those angioectasias argon plasma blasted to seal them and I took months and months and months to recover from that anaesthetic despite initially coming out of it just find and dandy.  It is always the delayed reaction that is the problem in CFS.  I don't want to go through that again but it seems to be becoming a recurring theme in my life.  It is so stressful to the body and I know it does not need any more.

All I asked for (mentally) was to be well enough to go and see grandson Cohen for his birthday next week.  I did not see him for Christmas.  It seems like I won't be going especially now that I have scheduled a doctors appointment for the very next day.  I find it hard enough to get there without having post-trip fatigue.  It looks like I will be sending a parcel in the mail if I can get to a PO.

I want a mobility scooter for when I can't walk without causing a relapse but I will then have to join the ranks of all the others who have to learn to get over the embarrassment of having to use one when the "you look alright to me" attitude strikes like a vicious snake.  It is a shame they do not have them in supermarkets here like they do elsewhere.  As it stands now, a trip to the supermarket is a huge endurance test which leaves no time for browsing.  I took my camping stool once but I felt a bit strange using it just to have a breather.  The looks!!!

B Went to the Doctor and My lips are more swollen today

 

It's a piece of capsicum.  I read it was an anti-inflammatory pain killer.

An oldie but I thought they might want it one day.

B got the not nice doctor apparently when he went to the clinic.  He did not go to the hospital at all this time.  The doctor just gave him an xray form to use as soon as it happens next time.  But as far as B is concerned the Thursday lung hole has healed over the last few days.  They must be small.  Last time in hospital they did not even see it on an xray.  I suspect the only reason he made a doctor appointment was so that he had an excuse not to go out to Roger's and get in one more day of healing.  Roger is crying out for him.

Just been doing nothing.  My mouth is burning really badly today despite the cortisone and my lips are feeling fuller and the outside is getting dry.

Crohn's of the Mouth?, Number two on his 5th hole in his non-stuck lung and number one is happy with work.



Playing in Wentworth

 April already!!!!

The leaves are falling off the crepe myrtle after it's second late flowering and they are also falling from the Tropical Birch so I am waiting for Flora to announce as she does every year that it is dying.

I went to Dr Fleur and she does not think it is Shingles because the lumps were on both sides of my body and only 2 were painful.  Other people say you can get Shingles that crosses the mid-line.  I do not know what it is and neither does she but she does want me to come back next week.  She thought this time that the burning mouth/tongue thing could be a lack of B12 so she arranged for an injection then and there.  Unfortunately it has made no difference to either of those symptoms.  I am back to square one.  So now I am wondering if it is Crohn's of the mouth?  It can effect anywhere from mouth to anus after all.  I have no ulcers (yet) - just bright red little swollen front gums top centre and a red tongue tip.  The burning pain in my mouth is just like the burn from reflux and the burn in my gut that I get.  A mouth full of acid feeling.  The sort of feeling that signals that this is not good for me.  The only other thing I can associate with it is a fuller lip feeling.  I did notice that a long time ago and thought it was because I was more hydrated than dehydrated with the electrolyte fluids.  After that it was the tip of the tongue but back then I also had sore throats going on.  She says it is still "mucky".

The blood test related to Plaquenil show no problem with it in regards to my liver by I have elevated lymphocytes again and she equates that with virus.  I think she noted that my heart was racing.

I feel better than I did a few days ago fluey wise but this burning mouth just will not stop and seems to be worse today.  I have not really found anything I can put on it that does not sting.  Tried mouth rinses and stuff and salty water and tea-tree oil water.  I do not know what to do but I am still trying yoghurt smears, chia seed gel - got any ideas?

Bad news from B this morning.  Two lots actually.  He has another hole in his lung that he has not had seen to.  It is worse than the last one but not bad enough that he cannot control its inflation and deflation.  He is becoming an expert.  Once again Roger is just wanting him to come to work regardless but B knows it takes rest to heal it.  I have encouraged him to go to the doctor on Monday if he will not go to hospital so at least this one is on record.  I sort of hope he can hang in there until he sees the specialist which is now going to be in May at Nambour.  I do not want him having his lung stuck to the chest wall until he sees the specialist first and even Brett is getting worried that he will have to have the op but he can also see a life where he may not be able to have a manual type job and even discussed the pension today on the phone to me.  So it seems if the worse comes to the worst then it is already planned that he stays home with Cohen and St goes out to work.  He is also re-considering his course options.  Perhaps computing now.  However I realise now that having the op would probably allow him to continue to work.  It is just that I read that if the lung is stuck like that, it makes the option of a future lung transplant difficult.  That is why I want him to see the specialist to ask about it.

B was lifting furniture yesterday which made his lung worse.  They got some package deal and actually they were in Kawana but did not make it down to see me.  Some bright spark left the window open in their bedroom when they went away and they came back to at least a mouldy mattress.

The second piece of bad news was Missy the cat.  She slowly paralysed to death last night after they found her at tea time unable to walk because of her back legs.  They looked for ticks but could not find any and so they wondered if it was another young brown snake.  They had already seen one right next to Cohen ealier in the week which B killed and Cohen was told to run from.  B was none too happy.  I could tell it was traumatic for him because St would not let the cat die alone and B got the job of watching every minute till its last breath with its eyes staring ahead open.  St could not bare to watch it but wanted someone there nevertheless so it was B digging a grave at midnight last night.  An April Fool's day to remember none of which was good for his lung.  I can imagine now that a discussion about vets (after the cost of the last episode) would have been heated if it was considered.  Maybe that is why B got the graveyard shift.

Money is always an issue with B having to extract what he can from Roger and it seems this whole idea of living rent free at Jan's place while being at her beck and call to fix vehicles and maintain the paddock or yards is not working out so well.  Roger has no time or energy for anything else and most of B's paid work comes from Jan too.  Whoever she is.

Number One has only made contact via Facebook once since the earlier post about him.  I asked "How's things?" and he said "There ok. Work is going well."