The last two months

Hi everyone,

As usual please ignore any grammatical and spelling errors caused by voice to text.

I have been alternating between being extremely busy and extremely slack. Since my last blog I have watched all six seasons of breaking bad and have banned myself from downloading any more TV series until I have completed this blog! I have also racked up over 400 km on my wheelchair, over 1500km in the car and 4000km of frequent flyer points.

The Townsville scrabble tournament which was held way back in August was a great success, unfortunately my playing was not :-) We held the Saturday night's barbecue at my place at the Dalgety. It was lovely to have a drink with old friends and new although I still feel guilty that I can't help clean up after the wine is finished!

I took my first trip over to magnetic island for the magnetic island scrabble tournament which was held mid week at the picnic bay pub. The renovations are great and the food was excellent value for money. Sadly my slide down the scrabble rankings continued :-)

Two days later it was time to pack my bags and head off on the road trip to Cairns for yet another scrabble tournament. The car went well on the highway and I had no skin issues develop. So I really had nothing to blame my poor scrabble playing on :-) We stayed at Cairns Central Plaza, I wouldn't hesitate to recommend it to other wheelchair users. We caught up with Margie and Ralph and Ebby for dinner on Saturday night at Doninnis on the pier. I had to drink extra lemoncello that night as I was worried that Val would drink it instead of me! After another day of Scrabble on Sunday I managed to sleep almost all the way back home on Monday.

The following weekend we headed north again, this time to Mission Beach for Brett and Mandy's wedding. Casey and I drove up on Friday morning and Darrel followed later on Friday night. I attempted to eat a packet of chips in the back of the car while Casey was driving to save time, it was not a success. For every chip I ate there was a handful of chips that went on the floor and in my hair and in the chair. The wedding was held on Saturday down the beach, it was a beautiful ceremony followed by a picnic on the lawn and finger food and a desert bar later in the evening. An awesome wedding with awesome friends.

We drove back on Monday just in time for the "take my seat" event on Tuesday morning. Take my seat is a fundraising event for SIA designed to give public servants and business leaders an insight into some of the difficulties that disabled people encounter by getting them to spend a morning in a wheelchair.  I was paired with one of the town planners. I took the poor man up and down the worst pavements in town, he worked so hard at sitting in and pushing the manual wheelchair that by the time he got up out of the chair the entire back of his pants were wet with sweat. I felt very satisfied and a bit guilty :-) I will definitely volunteer again next year…

A week-and-a-half later and we were off to Sydney to attend the walk on program, I have posted some videos and photos to the JB movement movement Facebook group. The Wahkon program exposes participants to innovative physio techniques. My favourite activity was walking on the treadmill while suspended in the harness. I hope to do more of this when I return for nine days in November. The program is only run on weekdays so I had time to catch up with Andrew Mearns and Colin and Janet and cousin Tony and Emily and their son Otto for lunch on the Sunday.

Since returning from Sydney I have been slowly weaning myself off some of the drugs that I have been on. I have reduced my dosage of Lyrica to 1/4 of what it was and have eliminated another painkiller altogether. I feel a lot better and more optimistic than I have in months. To offset these positive steps I managed to give myself a pressure sore on my leg from some of the chair adjustments that were made in Sydney. I felt very stupid for not noticing it earlier and adjusting the chair back to the way it was. Fortunately it cleared up before the Cat Empire concert that was held at base backpackers on magnetic island - what an awesome night that was! thanks go out to Larissa Huxley for organising everything, basebackpackers, picnic Bay Hotel, and some cherries. (Sunferries, you stupid iPad! Not some cherries!)

A week later and Darrel and I were off to see Missy Higgins, another awesome but completely different gig. If you can get tickets to see her on her latest tour I highly recommend you do so.

Since the concert I have been trying to get back into a regular exercise regime. Hydrotherapy has recommenced at Kokoda pool on Fridays and I have been having some outpatient physiotherapy at the hospital on Thursdays. We have been practising sitting and standing in physio. Standing is very labour intensive as I require one person to control each leg/knee and a stronger person in front of me to stop me falling over :-) I think I am getting better at it but it is slow going.

I only have one new personal best to report: 10 km on the arm bike on resistance level three in 43 minutes and 22s.

An extra special thank you goes out to my sister Ky for arranging this new iPad for me when the old one died.

I think that is most of the news for now I promise not to leave if this long next time...

Hope you're all well and happy XXX

Where did the time go?

I can't believe nearly 3 months of gone by since my last blog, I am so sorry it has taken this long.

As always please excuse the errors in this blog, iPad voice to text really needs improvement...

Things have been very much up and down over the last three months sometimes it feels like two steps forward and one step back and sometimes it feels like one step forward and two steps back!

Shortly after the last blog I managed to burn myself quite badly on a plate of Gozleme (Filled Turkish pancakes). I decided to be independent and go and get the Gozleme while Darrel ordered us some coffees. When I paid for them I asked the market stall holder to put them on my lap when they were done, straight off the grill on a paper plate. They started to slip off my lap on the way back to Coffee Dominion so I held them down with the back of my thumb - I could tell they were pretty hot! By the time I got back to the cafe even my leg was hot. Fortunately I found a table fairly quickly and got Darrel to put them on the table. 

I like finger food as I can feed it to myself which makes me feel not quite so gimpy. I polished off those pancakes in record time. When we left the markets a little later I realised my leg still felt like it was burning. As did my thumb. Which had a huge blister on it. By the time we made it back to my place the blister on my hand was even bigger and I was really worried about my legs. Given the size of the blister on my thumb it was pretty easy to make a decision to cut my pants off, I good thing as the blisters on my legs were also huge. Those of you on Facebook may have seen some photos. Darrel was absolutely fantastic getting me to ice the burns for 20 minutes on and off for the next six hours And then helping to get me into bed without using the hoist And then finally getting the paramedics to visit. The paramedics told me to see a doctor the next day. I was too scared to get out of bed using the sling as I thought it would pop the blisters on my leg so managed to convince Dr Tracy Simmons to visit me at home. She was fantastic and advised me to take it easy while they were healing.

My wonderful sister came around the next day with a magical healing light, a bottle of disgusting aloe Vera juice, Vitamin C and zinc tablets and some printouts from http://www.apparelyzed.com 

 to illustrate that I was not the only person to do this and therefore not the stupidest person that ever lived

I spent the next four weeks doing no exercise, reading lots and watching lots of TV series including all five seasons of damages. I sure did miss my exercise endorphins and became quite depressed and horrible to be around. My mood may have been exacerbated by a change to my drugs (Lyrica), And the fact that the stick in the arm was due to be changed, and increased pain levels due to lack of exercise.

I managed not to get the blisters infected But have had a few trips to the emergency department for other infections In the last three months.

Since the burn I have become almost addicted to http://www.apparelyzed.com/forums

It is my first point of reference for everything related to disability and sci even though I don't like some of the answers. I had been very hopeful when I read about the phase 3 trials that are being carried out by ChinaSCINet see 

http://www.news.com.au/technology/sci-tech/hong-kong-stem-cell-trial-gives-spinal-patients-hope/story-fn5fsgyc-1226670516113

But it seems people have been saying for years that a "cure"Is just a few years away... So it turns out that while I am mostly good at managing day to day contemplating a much much longer term with this injury Is really tough And really confusing When you need to think about the best way to manage financially physically and mentally. It can turn you into a bit of a basket case some days.

Fortunately I got back into the exercise and even managed a few new personal bests - 10 km on the leg bike in 56 minutes and a new top speed of 45 RPM. And remember folks that's all me, no help from the bike at all! Now I just need to replicate that or better it... Hydrotherapy has stopped for winter so I have no new records - But I have been "air-swimming"On the edge of the yoga table So I don't forget what to do :-)

I have had some lovely visitors recently - Margie and Ralph from Cairns and Sam from Brisbane. We managed to continue the tradition of long lunches at a touch of salt restaurant.

I can't believe that August a.k.a. Scrabble month is already upon us, the Townsville tournaments are on the 17th and 18th, the Magnetic Island tournament is on the 21st and the Cairns tournaments are on the 24th and 25th. And I don't know enough words!!! And it will be my first trip away since arriving home!!! And it's a long drive!!! Do you think I'm nervous much?!

Mandy and Brett's wedding is on the weekend after Cairns In mission beach, I have managed to find some nice wheelchair friendly accommodation at Lillypad's cottages.

I have also finally booked to go to walk on Sydney in September for some more intensive physio. My entourage and I will be staying at the free SCIA Choices apartment at breakfast point. I have loads of questions to ask the staff about equipment that I am looking at purchasing (Thanks again JB movement movement). I will also be meeting with the manager of the program to try and entice one of the staff to come to Townsville for a week to help train my Physio and yoga Instructor.

The final bit of news for today is that my gorgeous niece Cali has to give a speech on a person that they find inspiring and that she has chosen me, which is very touching and over whelming. I cried a bit when I first heard! as I have been dictating and typing this blog for three hours now I will bid you goodnight I hope you are all happy and well

xx

Latest PBs

A few new personal bests to start you off.  Ten kms on the leg bike in 90 minutes (resistance level zero); ten kms on the arm bike (resistance level three) in 45 minutes; tax return submitted (with one day to spare!); and I finally finished Ken Follett's book "Winter of the World".

There are no new hydrotherapy achievements as last week's session was cancelled.

I have been disciplined enough to do this blog before embarking on Book 14 of "The Wheel of Time" series, which Robert Jordan started writing in 1984.  He died in 2007 but left instructions that enabled another author to complete the work - thank goodness!  At 918 pages it should keep me occupied for quite a while :-)

I have an appointment scheduled to try the Easy Stand Glider on Thursday morning.  Hopefully, my tax refund will be in my bank account by then :-)

I have another appointment at the Hospital with local Spinal Specialist Dr Tracey Simmons to discuss some changes to my drugs, HBOT (hyperbaric oxygen treatment), Botox (to try to help straighten my fingers on my left hand) and something that I can't remember in this point time: mental note: "Must make lists".

Hypermed.com.au (site recommended to me by Walter Starck) has piqued my interest into HBOT.  Unfortunately, I have also found websites detailing a fraud case against the owner and practitioner.  I have not had any strong feedback from previous clients as yet.  My investigations will continue........  

Darrel's Mum, Stepdad, Aunts and Uncles paid me a visit for afternoon tea which was enjoyed by all.  Col (Stepdad) remarked that Darrel had made the best cup of coffee in Townsville, which is high praise for Darrel and for my brother-in-law Ron Buschgens' coffee roasting skills.  Fortunately the roasting machine is working again, so Ron kindly gave me some beans to give to them for the long journey home.  They left this morning and hopefully are taking it easy and driving safely.

We caught up with our friend Gavin of matesrateswines.com.au for Friday night only, but he will be back next Sunday for another visit.  He has left Tasmania to enjoy two weeks of sunshine in North Queensland before winter sets in properly.  He sent a case of wine ahead of him and hopefully will have some left next Sunday ;-)

We had a great ladies' long lunch at Larissa's on Lockheed on Saturday.  We did not resolve Helen's wedding dress dilemmas.  Larissa made Long Island iced teas as a welcoming cocktail.  I had three which may explain my need for a little snooze in the sun after our magnificent lunch.  It was a great day.  

We had a lovely Mother's Day lunch at GYO on Sunday, followed by two games of scrabble.  After Val whipped my butt in the first one, I felt the need for some revenge, and got it!

I had a lovely catch-up with Mark Bogiatzis today - thanks for the coffees, Mark, and thanks to your Mum for a wonderful jar of home made Greek shortbread.

I spent the rest of the afternoon refreshing myself on the Wheel of Time Series, through Wikipedia; thank God for Wikipedia as it is difficult to remember the plotlines from the previous 13 books and prequel which total around 11,000 pages!

I love fantasy series but they are terrible for my scrabble as I keep thinking the made up worlds and words are real.  I shall probably play a lot of phonies tomorrow night at Scrabble Club.

There are some photos up on Facebook illustrating my incremental gains in yoga.  I can now get my fingers past my feet in a forward bend!  

I hope you all are well, and thank you again for taking the time to keep up with my progress via this blog (and a special thank you to Val for typing the last three).   Val accepts any error as her own in typing this.  Julie disagrees with Val on this.

That's enough - we deserve a glass of red wine now - BYE.  

Monster truck

Hydrotherapy news first:  I am currently up to 21 laps of the 25 metre pool in my hydrotherapy sessions.  We have a make-shift arrangement to try and get my legs and flippers working.  Because I am so floaty we need ankle weights to keep my feet under water.  We also need a way  to make sure the flippers don't cross as I have a tendency to go pigeon-toed.  We do this with some foam floats which also offset some of the effect of the weights.  It is very difficult to get the balance right so I am still investigating alternatives.  

I am finding standing up in the pool a lot easier but still need a nice young man under each arm.  Then again, who doesn't?  :-)

We have also started teaching me to roll over.  This could be re-phrased as trying to teach me not to snort the chlorinated water......  I don't remember this rolling over business being so difficult when I was five!  The next time a proud parent tells me of their child's great achievements I will believe them!

As you can tell from all of this, my hydrotherapy sessions are a bit longer than they used to be.  This is because I have purchased the beach wheelchair aka monster truck.  The wheels are enormous.  Darrel pumped the tyres up quite high, not realising the implications this would have for me getting the chair in the water.  At one stage I thought it would be a paddle boat that took five of the students to sink the sucker!  This week I am letting the tyres down!  There are still a few things to sort out with the beach wheelchair - it has no brakes, which will be easily fixed by a chock of wood; it has no chest strap, so I am currently using a belt; it has no foot rests; AND, we managed to cause a little bit of damage when we accidentally ran the chair into a wall (Darrel is getting the tyre fixed for me, god bless him.  There are some photos on Facebook if you wish to see me in the monster truck chair!

I have found a few yoga instructors who are happy to come to the apartment to help me with my physiyoga.  Leah does Thai yoga massage so we have based her sessions more around that.  Meredith practises more traditional yoga and I have been loving the meditation and relaxation at the end of her sessions.  I may have a third instructor in the near future as well.

Yesterday I managed eight kilometres in one hour on the leg bike and ten kilometres on the arm bike.  I would like to do this every day but often run out of time and steam :-)

I have also been busy with my Accountant arranging last year's tax return and discussing various new business ideas.  The sales rep for EasyStand.com delayed his visit so I haven't yet tried the glider machine, but I am guessing my tax return refund will go towards it.  

It hasn't been all work and no play.  Scrabble Club continues to meet at my place every Wednesday and we try to make it to Touch of Salt for their Friday afternoon drinks whenever the weather and our schedules permit.  Their last minute decisions to cancel if it is raining have resulted in a few impromptu parties at The Dalgety.  Thank god Darrel loves to fish and cook, although I think we have finally finished the 86cm Coral Trout (yum yum).  It was great to catch up with the Junkies (Peter and Vicki) and have Jamie back from Gympie for a weekend and Yoga Tracy back in between field trips at one such impromptu gathering.

A big thank you to Mary Vernon for the free range eggs and to the Cyclone Testing Station for some beautiful native flowers.  Also to Darrel's Mum for the lovely jam.  

It is now time for Val and me to watch "The Voice" and "The Biggest Loser" and have a glass of wine.  I hope you all have such an enjoyable evening as we will.   

XXXX

Blonde

Darrel's Mum Joan and her husband Col are in town.  They have made the long trek from Port August in South Australia with their caravan.  Darrel, Joan and Col came over for lunch last Thursday. 

 

As we were going out later that afternoon, I suggested Darrel move my car to the Disabled spot on the ground floor.  I had a call from him shortly after to tell me that a van was illegally parked in the spot.  He checked with the Building Manager to make sure it was nothing to do with them.  As it wasn't, I told him to park the car in.  About half an hour later he had a call from the Building Manager advising that the man owning the van would like to get it out, and was very sorry to have parked there.  

I decided to go and meet him.  As Darrel was walking in front of me, he came over saying how sorry he was, to which Darrel replied "It's not me you have to apologise to, Mate.  He reiterated his apologies to me and handed me three $1 scratchies, saying he hoped I would win $25,000.  I said "Well, if I do and the local paper wants to know who you are, do you want me to tell them or would you prefer to remain anonymous?"  He was very keen on remaining anonymous :-)

I didn't scratch the scratchies until Saturday morning.  The top one had three symbols that were the same with an amount of $25,000 at the bottom of the panel!  After the initial shock had worn off, Darrel and I started phoning our families to tell them the good news.  Darrel even took a photo of the ticket and MMS'd it to Val and Kylie as proof.

Imagine my disappointment when they explained to me that the three $2 symbols meant that I had won $2, not the $25,000 at the bottom of the panel.  :-(

Thank god we didn't take it to the Newsagent before the truth reared its ugly head.

Oh, well, it makes for a good blonde joke :-)

Procrastination

Sorry it has been so long since my last blog, I have been procrastinating. And very very busy!

I had a lovely Easter with Colin and Russell, lots of great food great company and great wine. We tucked into fresh mud crab on Good Friday courtesy of Darrel and spent Easter Saturday at Larissa's house celebrating Colin's birthday and admiring her new outdoor entertainment area. Larissa, together with helpers Ross and Val, cooked up 11 different tapas dishes and a fantastic chocolate birthday cake! I thought I would be too full to eat anything on Sunday but managed to scoff down Yum cha at Benny's. After that we retreated to the lounge room and the TV, I think I managed to get Colin and Russell hooked on Justified:-)

I had a great yoga session with Tracy on Easter Monday and got back up on the bike on the Tuesday. Unfortunately I woke up in the early hours of Wednesday morning feeling off colour. So off-colour that I woke Val to check on me. 

Some mother-daughter bonding experiences are great, others are not so great. Sharing a bucket falls into the not so great category. Don't know if it was food poisoning or a bug that is going round but as my temperature got higher than 38°C we decided to call the doctor to your door service. Dr Dominic was great, he gave us some Maxolon for the vomiting and diagnosed me with a UTI and gave me a script for right antibiotics after consulting with the registrar at the hospital. So much better than waiting out at the emergency department for hours on end. The rest of the week was kind of a write-off, I didn't start feeling better until Saturday night when I managed a few of Darrels crab spring rolls:-) 

During those couple of days when I was ill I managed to get hooked on "the walking dead" and watch the rest of series 4 of "justified" and download a season pass for series 3 of "game of thrones". Yes I have been very slack;-) I will however justify my slackness with my latest results on the motomed. My latest personal-bests for my legs are 6 km in 50 minutes and 5 km in 40 minutes with a top speed of 35 RPM! I'm very happy but hope to improve further next week.

I have only been to one hydrotherapy session since Easter. They cancelled one due to rain can you believe it?!! The cancellation did give me time to go shopping and out to lunch so I shouldn't complain too much :-) I have found a pair of jeans that fit and that is a wonderful thing, we also found a second hand beach wheelchair that I am going to make an offer on provided it fits in the car. The wheels are very wide and may not fit up the ramp.

 I tried out my new flippers at hydrotherapy yesterday but it was not a success. My feet float too much on their own but my regular ankle weights are too heavy. We are going to try again next week with little weights. I still managed to "swim"10 laps and did some standing - with the help of a young man under each arm :-) I was tempted to make some smart arse comments about this but my breasts were threatening escape from my new top so I thought I'd better not :-)

I have finally had a follow-up call from Easystand.com, they have a rep coming up at the end of the month to demonstrate the Glider machine - $11k but it looks great. I have also finally committed to the yoga table which is being custom-made by Meridian Massage In Sydney and should be here in two weeks. Tracy has had a job offer in her chosen field (geology) which is great but I already miss my sessions with her. I have arranged for some yoga sessions with Meredith next week which hopefully will be an ongoing thing. In 2° of separation Townsville it turns out that Merediths daughter is friends with my niece Cali!

I had a lovely visit from Margie and Ralph this week. We got thai takeaway on Sunday night and went to Watermark on Monday for lunch. Watermark is really good at the moment particularly the desserts (I can say this with confidence as I have now tried all of them¡). It has also been a week of catch ups - with my mum and my sister on Tuesday, Scrabble club on Wednesday, my hairdresser friend Shaun and my dad on Thursday, and my lovely Darrel, Shaun and Ronnie at "a touch of salt” last night. Special thanks go out to Shaun for the great haircut and Ronnie for the lovely scrabble rings. Darrel has gone fishing so I am catching up with Helen tonight and Larissa tomorrow. Wine and Scrabble are on the agenda and hopefully fresh fish on the menu tomorrow:-)

I am still planning a visit to walk on in Brisbane in July and need to look at organising a home swap which I will hopefully get onto next week. Other plans include a visit to my accountant to finalise last years tax return, checking out the beach wheelchair and as much exercise as I can possibly fit in!

Thanks to everyone for reading the blog I hope you enjoy this and again apologise for leaving it so long between entries xxx

Happy Easter

I was seeking inspiration in a glass of red wine while posting this blog but unfortunately Val threw it on the floor. Ironically this makes her the first person to still red light on the carpet in the new Apartment. Whatever, you know what I mean :-)

The last few weeks have been ridiculously busy and I have been exhausted at the end of most days and sometimes in the middle of them.  I am now regularly (i.e. more than once) putting in more than three kms active peddling with my legs and ten kms (on resistance level 3) with my arms on the Motomed.  I also do modified yoga with Tracy for two hours on Mondays and Wednesdays and an hour plus of hydrotherapy on Fridays.  Pretty good for a quadriplegic, I reckon :-)

We have recently found a number of other wonderful looking rehab machines online at Hocoma.com and easystand.com .  I want all of them, and have requested prices for some.  Pricey little bits of equipment!  This, in conjunction with the great results I am getting from my current exercise regime, has got me thinking that maybe I should start a new and innovative "PhysiYoga" clinic.  I am sure there should be some government grants available in addition to research and development tax deductions.  Hopefully these will include business class airfares to the USA and Switzerland to check the equipment out :-).  I've even looked at properties that may be suitable for such a venture.  What do you think, Folks?  Townsville could be the new SCI Rehab Centre in Australia.  :Perhaps I should approach Mayor Jenny Hill and see what she thinks........

It has also been a busy time socially, with outings for Tracy Armstrong and Dave Shorten graduations, St Patricks Day and Friday afternoon drinks at the wonderful Touch of Salt.  I also had a lovely visit from Margie and Ralph, they must have enjoyed it as they are coming back again in April.  Russell and Colin are coming to visit this weekend (Easter), so I can have a slightly early celebration with them for Colin's milestone birthday.  We hope to do this at Larissa's on Saturday afternoon in her new outdoor entertaining area.  Last time I visited the outdoor entertainment area a very cut lizard stuck its head up to say 'hello' to me.  A moment later I realised that it was a lizard without legs - ie, a snake.  Hopefully he will not join the party on Saturday.

While I am here I may as well confess to a few less worthy practices: yes, that's right, I have bitten ALL of the nails off of my left hand.  AND watched all of "Justified" and ALL of Season One of the  Walking Dead.  Seriously, though, "Justified" is completely justified and the best TV series I have seen in quite a while.  Equally as good as "Game of Thrones" and "True Blood" in my book.  And will you all please hurry up and watch it so we can discuss what happens in Season Four??

I think one of the truths for people in wheelchairs is that you can never have enough velcro.  Last week I managed to throw my phone on the floor in the bathroom.  Val kindly came to the unit to pick the phone up and give it back to me as there was a high risk that I would drive over it if she didn't.  Shortly after she left, I scratched my eyebrow and somehow threw my glasses on the floor - right next to the wheel!  I immediately rang Val only to discover her phone ringing on my kitchen table.   I have since obtained velcro for the phone but I am reluctant to stick any on my head to keep the glasses there.

Scrabble Club is going well and will be held at my apartment this week.  I hope my luck from the weekend holds out as Val gave me two 500 plus games and the lovely "outgazes" for 126 points (not on a triple triple :-( ).  I wish I could be playing in the Nationals this year, but it is a little too early.  It won't stop me obsessively checking the results on line and cheering on my friends.  Good luck in particular to Helen Maurus, Ryan Anderson and Naween Fernando: may the blanks be with you!  I would wish this for Alastair Richards but he is too good to need it ;-)

Darrel has been outdoing himself lately with delicious meals.  My latest favourite is the crab, coriander and cashew spring rolls.  We have also had some lovely meals out together most recently at Longboards (the mini fish tacos rock) and Yum Cha at Benny's.  We still haven't used our gift voucher to Watermark so there is more to look forward to in dining in the near future.

I would like to close this blog by wishing you all a happy and chocolate-filled Easter.  

xxx







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