Trying out the Scooter

I knew that going out for my birthday would end up making everything else worse and today hopefully will see the worst of it over being the 48 hour mark.  I am not only dealing with a lot of pain but with the cooler weather I am spending most of my time warming up bits that hurt so much because they feel cold.  Every morning after I have been up for a while, my feet turn into ice blocks and I have to sit for ages with them on a foot warmer but the tops stay cold.  Once they are warmed up which takes at least half an hour I've had to head back to bed to get properly warm but I have to guard against my top half, exluding neck glands, overheating so that I feel faint.  I have problems in the shower too with some bits needing hot water an other bits over reacting to it.  I am aching all the time and my back and knees need extra warmth to help with that too.  It is making me feel very miserable and there is no point going out or doing anything until that is sorted.  You know me, it takes me long enough to wake up anyway so mornings are slow.  I pick up as the day goes on after dosing up with pain killers but the pain is still too much for me. 

I got up for the day again at about midday and really wanted to use the scooter just to get used to it, before it looked like rain again but I was cutting it a bit fine.  I had missed the morning with a bit of sun around.  It rained all day non-stop yesterday and I hibernated and realised at the end of the day that the rest of SE Queenlsand went to vote but not me.  I didn't even know the date - I just knew they were coming.  Talk about out of touch!

At least I don't have to get dressed up too much just to sit on the scooter and I don't have to worry about loose fitting clothes falling down so I went as I was.  I wanted to check out the footpath on the main road with a view to getting to the local shops.  Until that point I have to ride on the road.  The grass was too bumpy.  I ride on the opposite side like a pedestrian is supposed to facing the oncoming traffic.  A few cars went by which I slowed down for.  I was appalled at the state of the footpath.  It was way worse than the road and some of the inclines were downright scary as you crossed the side road down and then up again. I ended up back on one of the side roads and headed for the park at the end of the street where you stay when you come up for a holiday.  I thought perhaps it would help me avoid the main road and the footpath and be a safer route to the shops.  It was very bumpy going up the raised bits on the edge of the path where it joins the road even worse than my own driveway and you do get shaken around a bit.  Probably enough to put my stupid back out since I can do that just tossing and turning while asleep in bed.  My back is already bad right now causing horrible migraine-like headaches but I am already loaded up with opiates so I can't take any more.  It's no worse than before the ride.

I decided not to go through the park past the five way junction of the paths because it was looking very dull and even spookier in there.  So I arrived back home just as a few spits of rain started.  I still have not been able to clear out a space for the scooter in the garage and it is a job to turn it around in there but going out for a ride on a day I feel so horrible was proof to me that I can get out of the house without using too much energy just to get some fresh air and I am glad for that alone.  I used to go for mini walks - just around the block but to do that now is like asking for more pain and flu-like illness.  So...the scooter has served a purpose even though I did not make it to the local shops which was the weather's fault more than anything.  I really am disgusted with the footpaths though.  I am sure they are much better on the coastal walk pathway and hopefully on the other side of the shopping centre too.  I was told by a scooter shop that there is a lady who rides her scooter from around Military Jetty to Stockland shopping centre once a week, every week so it must be doable.  I'd like to get to Jan's place down town for my first long trip on it because then I have the option to recharge before coming home because I do not really know how long the batteries (2) will last being second-hand.  The service report called them "serviceable" and I do not know what that means.  Are they servicing me - the user - or does it mean they are not dead but they could be serviced to improve them?????  Anyway with that 20 minute jaunt, the battery needle had not moved (except going up the path inclines).

Showers are going to be around for a few days yet so I won't be doing any longer trips for a while.  I  have not been motion sick/dizzy when moving around at home this week so I cannot test out that aspect of it.  I remember the Go-Go scooter I tried out felt terrible that day but being a passenger in a car would be the same.  I often complained when S was driving around roundabouts.  Made me want to vomit.

I did get a phonecall from B for my birthday by the way - oh I told you already????  I don't think I told you that he has that spotty rash again.  Remember he had it for months last time?  But, I also found out that St's cat has had kittens (much to Cohen's delight) and that they have fleas again.  I would not mind betting he is allergic to flea bites but the last rash he had did not look nearly as big as hives.  More like measles.  I told B to do something about it but I guess there will be arguments over who has to spend the money on flea treatment.  He has not heard back from JB HiFi so he is no longer holding hope for that.  He tells me that you cannot even phone employers like that nowdays.  All applications are done online.  Same with Coles, Woolies, Bunnings etc and they do not provide information for individual stores.  Everything is centralized.

Was very glad to hear about Mum's wisdom teeth surgery and recovery going so well.  It continues to amaze me that she handles things so well at her age while I am falling apart and suffering way too much at such a young age in comparison - or even an old age for that matter.  Life has been pretty cruel to me and I don't think it is my fault like some would like to suggest.

Birthday Blues

I felt so awful that I wanted to cancel but I didn't want to let anyone down so I persisted, resting between each step, and taking plenty of pills.  I was not in the mood for pleasantries and I had forgotten how much Karla's voice hurt my ears especially in a confined space like the car.  I picked her up you see.  The RSL was too packed with people and noisy for me and the speakers were too close to where we were sitting.  The music did nothing for me and the food was barely alright.  Jan, Sharon and Brandon came but Louise from school had a tour of Fraser Island to do,  Rob did not show and Marina was too busy with her move despite the fact that she is moving into the seniors units directly over the road from the RSL.  It has become such a rare occurrence for me to go out so it is not like I can catch up with them any old time. 

I was feeling better yesterday and perhaps two loads of washing as my only accomplishment for the day was too much for me.  I am bumping into things today.   But yesterday I tried to plan my wardrobe for today.  It was a warm day after a cold morning and today it was cool all day.  Choosing clothes is now very much of a chore.  I had to wear something loose so I would not get stomach cramps and that meant none of the pants I would have preferred to wear.  I had to keep my feet warm but I have no boots that are easy for me to put on.  I had to leave that to deal with today but yesterday I planned to wear one thing but today with some distress I left the house looking pretty bad.  See for yourself.

This is what I planned to wear yesterday

This is what I actually wore today

I lost a fair bit of energy washing my hair but maybe because of the rain, it ended up even fatter than yesterday.  I still have not found a day I could tolerate going to the hair-dresser.  It will come.  One good thing happened at the RSL with my free birthday KENO ticket.  Jan suggested I pick one number because the payout was better but the odds of just one number were slim.  I picked 27 for my birthdate naturally and the number came up.  I won $15 and gave Jan $5 because she was heading for the pokies.  Karla and I went for coffee at the cafe bar.

The best part of the day was riding my new scooter up the street and back again.  It was delivered around 4:30 along with a block of "White Bubbly" chocolate from the seller - Petra.  She knew I was hoping to get it before my birthday.  I enjoyed a little wind in my face riding along and for once I could talk to Flora out the front and not be thinking "I've got to sit down, I've got to sit down".

The nicest surprise of the day was a present from S which he hid before he moved out on Monday to go to Roger's after the hearing. It was nice because he thought of me in advance which is pretty rare.  B phoned.  He has fallen for HB and has no intention of moving back here.  He still does not have a job but he is enjoying his break too.  Not that he has ever really had to go too long without a break because of the bad seasons at work when they were told to take leave without pay.  Apparently that is why he left when he did.  His Widgee workplace lost a contract they were expecting and they were going to ask them all to take leave, which they did.

I can barely keep my eyes open so goodnight from the birthday girl.

Meet Marzi then Give to Marzi

Meet Marzi here.  Give to Marzi over there ======>

I'd want to be tested for Lyme Disease too if I had slipped down the greasy pole (as Paul Winter put it) that far.  The test cost heaps and has to be sent to the USA.

Donate top right of this page.

We are the Pioneers but we won't be cured

The older ones of us with little-understood neuroimmune diseases like Myalgic encephalitis had some hope last year of a cure when XMRV was thought to be the cause and anti-retrovirals the potential cure.  However we have to face reality.  The potential treatment called Rituxan is the latest hope on the horizon but we are privileged to have our fellow sufferer Dr Jamie Deckoff-Jones to tell it like it is.

If Rituxan works for ME/CFS, that’s 4 million people in the US alone who need a drug that can cost upwards of $20,000 per round of treatment, including the high level of care needed to administer safely; it probably will need to be given twice a year, must be continued forever and carries a significant risk with each infusion. For fun, that would be $80 trillion dollars per year for us all to get treated. The drug is apparently much cheaper in the UK; it is going out of patent in 2015, so it will be cheaper in the US as well, but that also means there will be no funds to study it for us. The point is, it is not a sustainable model, this drug or another expensive palliative treatment. Nor would antiretrovirals have been had they worked very well. Too many people. And it’s not just this cohort, but several huge cohorts. Wouldn’t it make more sense at this point to figure out why so many people are getting sick with immunological diseases, rather than blindly killing everybody’s B cells? 

Read More from Jamie's blog

In addition to the cost issue, there is reaction to the treatment itself.  anti-retrovirals cause terrible chaos in the body as the battle against the retrovirus rages and Rituximab I see is a drug they use to treat Lymphoma (non-Hodgins) just like Dad had.  In other words it is chemotherapy.  There have been studies that reveal anomolies with our B-cells, I can't remember what - elevated possibly - so there is a link with Lymphoma already hypothesized and statistically there is a connection with ME in some studies (but I can't remember what).  Anyway, the point is that the treatment is likely to make us much sicker than we already are.  It is the same with Lyme Disease.  The antibiotics stir it up and savvy doctors put their patients on Doxycycline for a month before they are even tested for Lyme so that it is more likely to show up in the $3000 blood tests.

I was sorry to read that Patrick Wylie Kelly was lost just in the last few days to Lyme, pain and depression.  And I see too via Monique Martens that the political climate surrounding Lyme disease is in turmoil in Belgium as well as the USA.  

There have been a couple more TV segments recently about Lyme disease in young children.  It is not far off becoming a political issue here. It is now being passed on to offspring via their parents - sexually. I know that one of the STD's is also a spirochete (type of organism). 

An online friend's daughter who got Lyme on a Girl Guide camp is now being distressed by the Guide movement's warning to her not to name them in any future TV episodes.  She has worked for 4 years to become a Queen's Guide and is only a few weeks away from that while the very movement she loves is now treating her as an enemy.  The poor kid, as if she hasn't got enough to deal with.

I have also heard of someone's hubby having to now report any tick bites on the job.  Time, date etc.  

I am feeling somewhat better today :)  

I'd like to base my treatment on biochemical testing

This looks like a good idea for anyone with needle phobia, for getting blood drawn, getting tattoos

I'll tell you when it happens

UPDATE:  Now his Dad is picking him up from here to take him to Brisbane and his new company icontract handles all the sending what money needs to be sent out of their pay.  It seems since he has been earning a little, he now owes Ange for child support so she says.

TV room for two - be better with 2 matching recliners

Still driving up the lawn till Flora cut the tape - Council did not come back to do it - should see their smoko rubbish in the holes left to still fill in - tow bar still hits bottom -

He was so determined to go......but he didn't.  I've got someone to pick up the scooter next week for $50 which is how much it would have cost plus petrol to hire a trailer and go ourselves.  For a moment there I thought I had a reason to use the tow bar and ball on my car.  I have not used it and it always hits bottom on the curb backing out unless you get it just right which took S three weeks to master.  Now that the roadwork has been taking place, and my driveway has but cut, drawn, quartered and replaced with currently wet concrete, I am not sure if it will be worse or better.  I asked the workmen if they could try and make it easier for me and my mobility scooter but it looks quite a bit steeper at the end.  I was told that we would be allowed driveway access later today but they were trying to opt for Monday.

I know S will be going to Brisbane on Monday....now it will be probably by train instead of via Roger.  Beyond that I really can't be sure can I, his changes of plans are unpredictible.  He has so much to deal with and is always fixing up mistakes from the past while making new ones.  It must be a terrible life but I can no longer be very understanding because of my own problems.  He cannot get a consolidation loan or personal loan on Newstart and he is currently paying $100 on interest each month on a measly $5000 Go Go Mastercard debt.  He was warned years ago by me that it wasn't so measly and that interest-free period was only any good if you had the discipline to pay off the debt before interest-bearing commenced (or whatever the word is).  Anyway, he can get a better deal on a personal loan which he's been told he could get if he is back on Austudy so he will start studying again.  I didn't know he'd stopped.  I thought he was between semesters or something.  He has also taken a month off work but apparently is allowed to re-commence whenever he feels like it.  S is convinced his boss loves him despite the last conversation I reported.  Maybe this is the sort of job that will lead him into another quarterly BAS debt because he is probably self-contracting.  I know he is paying off a Centrelink advance like I am now with the scooter but I have a bit of Super which will cover mine easily if I wish to withdraw it.  He will have a SPER debt still for unpaid road fines I think.  I mean, how can anyone live like that?  I didn't teach him any of these habits.  It's another narcissistic trait I read, like his father.  I wish he would cave and seek help, even an occupational therapist.

I could keep unloading forever about S but you know B isn't such a responsible angel himself either but he has no excuse.  He is capable of logic except when he's been drinking.  How many times now is that he has lost his license or even a lowly learner's permit for drink driving.  That's disgusting.  How did I breed these kids?

A Sudden Change

Suddenly S wants to go out to his father's place.  "It is the right time" is about all the explanation I got.  All I know is that he had his first dental visit for a crown on the tooth that was worrying him and I was shocked to find a temporary that isn't even the twisted looking eye tooth I thought he had been talking about.  It was a smaller one that he said was being pushed back.  The bill is $1700 plus.  But now that it is sorted he wants to move on????  Not sure about the real reason but he says he is busing it to Cooroy tomorrow.  His next appointment in Buderim is 30th.

Yesterday, we went to Buderim together, he to the dentist and I to finally see the scooter.  I was not feeling well but I can usually compensate for that when dealing face-to-face with people.  I took it for a spin but they lived in such a hilly part of Buderim that the incline was probably too much for the scooter.  It was fine going around in circles in their garage and I did not feel my spine was jolted too much going down the curb so it was much better than a portable without suspension.  Nevertheless I needed answers to a few questions which they were going to follow up.  The owner apparently had it speed limited and I wanted to know if that could be undone.  To cut a long story short, they decided to put it in for a service for my peace of mind and that will be tomorrow.  Actually I was thinking about paying a shop to go out and check it on my behalf which amounts to the same thing and the same cost.

the new curb in the wrong place, already with a patch-up job

I have not even been interested in dealing with scooters or anything today because I have crashed badly and the pain and illness has been too much.  I've been in bed most of the day so now I am up late.  Not far off going horizontal again though.  I've had to avoid a lot of computing because of my eyes anyway.  Maybe they are a little better after taking cod liver oil with its vitamin A for two days.  Or it could be that they were shut a lot.

S told you his plans to move to Brisbane so you probably know more than I do as to why Brisbane is chosen all of a sudden.  What I think is happening is that Roger will take him to Brisbane on Monday for the hearing or conference or whatever it is called and then he will go back to Roger's until around the 3Oth.  I have no idea what he has planned for that date, after his next dental appointment - a rental property available then I guess.  He is not being very forthcoming.  I told him that if I wanted to buy this scooter I needed him to hire a trailer and pick it up for me but he says he's going regardless even though he could easily stay the weekend and still go down with Roger on Monday.  So it seems that if I need him, he decides to go.

The ultimate ipad toilet rest

After being called Jabba tonight because I asked him to bring me my tea on a plate to my chair instead of getting it from the kitchen myself as per usual procedure, maybe it is just as well he is leaving.  I am in so much pain that I cannot sit here any longer and will finish up now but why can't he be a little caring when I need it?  Jabba after Jabba the hut, the big, fat creature in Star Wars is it?

Change for ME

The banner will be used at the NDIS rally on 30th April along with some flyers we have to hand out as well as badges, magnets and t-shirts. It's a great start for us!

I am going to look at a second-hand mobility scooter at Buderim tomorrow probably if it is not raining so that I can test drive it.  So any birthday money will now be going towards a canopy and rear bag for it and a service and hopefully not new batteries because it is only their word for it as to whether they have been kept charged.

"Pride Ultimate 4 Mobility Scooter (medium sized mobility scooter)
1 owner
Very good condition
Only driven around retirement village
Maximum user weight 157.5 kg (350 lbs) Adjustable seat
Shopping basket, rear view mirror + power cord included
Can be registered
Pickup Buderim

$750"

Will also have to organise transport because it is not a portable one.

He's Back

No wonder I am nearly insane when it comes to dealing with S.  I cannot count on anything happening for real.  I got no phone call to inform me but here he is, back again with his gear bar what he forgot.  He always forgets something.  Roger dropped him off mumbling that "he wanted to come back because he has to go to the dentist on Monday and now was the only time that worked for me".  S's teeth are shifting in his head again.  Why can't he see it is a psychological problem not a dental problem?  At least there were no flesh-eating bacteria this time.

A most abusive (that's how I feel) end to a not very happy day.  I have also come to the conclusion that I cannot afford to have a week at Lisianna Apartments in HB to see B and Cohen for my birthday even with sharing the costs with Jan.   It is now $122 a night for the 2 bedroom.  And here is me thinking of a week away.  For some reason it is booked out over the weekend of my birthday anyway.  Anzac Day I suppose.  It was just another empty dream and I have to beware because despair is trying to settle in.

Here's something to read in case I forget to tell you about my forgetfulness and fibro fog.  One phrase hit me as true for me ...."difficulty fine-tuning its response to specific stimuli".  The article can be found here.

Killing Time in Kin Kin

He got picked up by Bev this afternoon with a lot but not all of his gear.  I hope he lasts out there until 23rd because he does not really want to go.  However the car is up there and he sold it today on Ebay for $250 less fees.  The pickup will have to be arranged.  It looks like a hot rod racing kinda looking person bought it.

I'm in a lot of pain today (it's going to rain tomorrow) but I am relieved I will get a break from S.  He was helpful in his own way and when he is thinking beyond his own business, his intentions can be good but we were really starting to clash every time he would get ill because that is when he is even more positive his way is the only way and that I should do as he says.  In fact if I had done what the man or Roger said, I would be able to keep a man he tried to tell me.  Who needs them?  Men I mean - that type anyway.

The biopsy

Have to drive on the nature strip to get out or park down the street

Happy Easter

I've been up and down healthwise and I've got a lot done (for me) after a couple of down days.  It is a bit of a boom or bust cycle but it's nice to see things getting done.  I'm not so good today which is payback for 2 days ago when I know I did too much.

I'm getting rid of stuff and cleaning stuff and he has been helping with the things that he has a bee in his bonnet about....the garden shed, the BBQ.  I have gotten rid of most of the toys to a local Helping Families Facebook page and there are a couple of the toys in the photo they advertised on their group (it is a closed group that you have to ask to join).  The older style playboard for the cot or playpen was from Grandad to Scott and the stacking ring toy was from me to Scott if I remember correctly.  Hungry Hippos is getting a new home online too.  They are going to be taking the double bed mattress on Thursday but Darren arrived today unannounced to pick up the spare entertainment unit.

Balsa Wood Dinosaurs that I gave Connor that we all made also being claimed (for free)  online today

I wasn't happy about the timing at all because I had Connor here and was trying to get ready for an Easter BBQ I had invited Jan to that S was going to cook.  When I woke up this morning it was the last thing I wanted to do today but it turned out quite nicely.  Connor only ate the marinated chicken wings and no salad or chicken rissotto.  Jan thought it was all lovely especially the marshmallow eggs which were cadburys and I loved them too.  Connor already had been given his Easter presents from us because I had no idea I would be seeing him three times over the Easter holidays but I think his Mum is glad to get rid of him.  When he suddenly flipped out walking spazzo talking about how the wind  had changed and looking troubled after we had a little disagreement I thought...oh no, here we go again.....another one who transfers his emotional stuff into something outside of himself.  If anything it was a mood change in me.  I lost my patience with him because I was trying to get ready and I got so sick of hearing about Dragonvale then.  I was not feeling very well either.  He is very sensitive - even his duck tail annoys his neck. 

He does not like so many foods so he gets "Easy Mac" microwaveable macaroni cheese here quite often

Goodbye Gympie? Seems I am the last to know

First I knew of it was on Facebook just now when I found this:-

out of gympie bout fucking time.

· · Share

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  Jamie Sonter U comin bak??
  

  16 hours ago ·
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  Dwayne Allen Where ya headed mate ?
  

  16 hours ago ·
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  Lakota Arundell Where u at now brother, gotta catch up soon, I'll be back on the coast nxt wknd
  

  16 hours ago ·
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  Nathan Arandale See you 2morrow I hope!!!
  

  15 hours ago ·
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  B Jamie and mouse nice working with ya been good times boys. And loco never that far away not 2 catch up bro.
  

  13 hours ago ·
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  Nathan Arandale It's all good Bretto. Shaz says that she will do your dishes!!! Just make sure that you do the decent thing and let Pete and Di know. Catch ya round one day. Cheers, Maus
  

  13 hours ago ·
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  B Yea spoke 2 pete 2day gonna miss it alot and u never know I might be back 1 day if pete lets me.
  

  13 hours ago ·
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  Nathan Arandale Good luck in what ever you decide to do. I will be in Gympie for awhile yet so you are welcome at my place whenever, Shaz says that you can even bring your dirty dishes with you if you want........
  

  13 hours ago ·
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  B Lol cheers bro ill let u know next time im in town.
  

  13 hours ago ·
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  Jamie Sonter Fuck man that sucks gonna miss ya at work
  

  12 hours ago ·
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  B Miss u 2 bro we had good times can 1 of u tell nev.tell him ill call him soon and let him know how im going.
  

  12 hours ago ·

Goodbye Green Initiatives

I still have painters mess around me.  Most of the gear stashed in the garage is still in the garage.

I had the IBD clinic the next day and indeed I am now scheduled for both upper and lower endoscopies in about three months with upper biopsies - one for whipple's disease.  I did not actually see the gastroenterologist I was referred to.  Once again it was Stephanie, the nurse practitioner. 

S has been looking (and driving) for rentals but as it got closer to his work trip to Mackay, it hardly seemed worth paying rent for a week where he would not be.  He was due to be picked up this morning at 7am but he is still here.  He got more and more worried about what was going to happen while he was stuck up in Mackay.  I tried and tried to get him to go and make a plan of what he would do if he suddenly got uncomfortable...eg go for a walk.  However at 8pm last night at such a rude hour and to a man whose wife is having MRI's for tumours, he phoned and cancelled.  He also lost his job.  "This is the last time you are going to stuff me around S".  I warned him.  Instead of distress over losing his job it was relief.

More to come