March 2023 - The Abridged Version

Yes, yes, I know that April is already upon us. But last month was so crazy, so exhausting and also so magical that I need to record those events for the purposes of posterity. And also to remind myself that even when I think I can't go on, I actually can.

The month started with the riot that was the Gallery's March Sundowner. Stinking hot, but an absolutely wonderful night of music, art, conversation and shenanigans. We sat out on the pavement, now wide enough to accommodate us all. We had additional musos dropping in from York, along with the uber-cool Guy Slingerland, the urbane Lawrence Jones and the instrumental guru David Sparrow, who also happens to be chief pirate of the York Yacht Club. The party belted on well into the night with Lawrence and Michael being the last guests semi-standing. I believe they crawled into their respective beds at about three o'clock...

The following weekend was the Sofoulis Family Gathering, held at Darryl's house just outside Toodyay. Lots of fun, food and vino was experienced by the older participants with the younger members just having lots of food and fun. Nephew Matt earned the reputation as King of the Kids, Michael John and Michael Lawrence renewed their bromance, Wendy and helpers produced superb spread after superb spread. Darryl was a dab hand on the BBQ and our test run of Will the camper trailer over two nights was quite successful.

No month would be complete without frustration from the NDIA/S. Or medical appointments. We continue to debate/argue/plead for a satisfactory NDIS plan so that Alex may live a wonderfully ordinary life and that the NDIA, Support Coordinator(s), Support Worker(s). Medical and Para-medical personnel all work collaboratively as a team. *sigh* An added delight is a review of Alex's Housing Authority circumstances that arrived in a letter so convoluted that Pascal, Alex's Support Worker to the Stars, was completely confounded and Alex became rapidly panicky. I have until 18 April to sort out yet another fine mess.

Medical appointments included the confirmation that Alex does have Severe Obstructive Sleep Apnoea and the start of his CPAP trial. The use of CPAP has made a huge difference to Alex's quality of life - he is sleeping much better, spending less hours in bed, his anxiety lessened and his daily functionality improving. Now, we just need a supporting letter from Alex's respiratory specialist confirming these outcomes so the NDIA approves funding of a CPAP device...Wish me luck.

Later in March, I attended the rooms of the delicious Doctor Daram to have half my head excised, Seriously, a Basal Cell Carcinoma the size of an insect bite resulted in rather a sizable chunk being removed from my head, Michael viewing my skull and Daram's incredibly neat stitching to hold of all my brain insitu!

The good news is that we went to the Caravan and Camping show immediately after my surgical procedure and spent about three very satisfactory hours researching mattresses, personal beacons, battery systems and dropping into the Avon Valley tourism stand. We arrived home shattered but pleased with ourselves.

The last week of March saw me meeting Angie, probably the most intelligent and empathetic shrink I have ever encounted. She cut through the crap, asked me specific questions and proposed that my depression and anxiety was a lifelong reaction to abandonment. From Mum, Dad, brothers (involuntarily), obstetric adventures and a desperately bad marriage I tried to save for far longer than should have happened. What a light bulb moment. My entire life suddenly made sense...

Has my revelation led to me becoming "cured"? Not yet, but at least I can make some sense and have a path towards recovery. I am determined to become the best person I can. Not at the expense of losing my sense of humour, my spontaneity or my spirit. I have no desire to become a shadow of myself, so I have to balance all these facets of my psyche. I need to be prompted if I ever become boring or pompous.

However, the absolutely best news of all was the arrival of Miss Violet Ella, baby sister to Miss Imogen Ivy and divine second daughter of Callum and Bronwyn on Thursday 16 March. After being the cause of yet another horrendous pregnancy, Violet quickly has become as beautiful as Miss Immy. She sleeps like an angel during the day, but has yet to work out her circadian rhythm, hence she is waking her somewhat sleep-deprived parents fairly frequently during the night. This is why sixty-year-olds should not have babies...The other fantastic development is that Immy not only recognises us as Nanny Kate and Grandpa Michael, but loves to give us hugs and tea parties.

There, in summary, was March. I hope that you get a kick out of reading this post as much as I did writing this. My blog is cathartic; I have this outlet to check that my recollections are correct. Plus, if at all possible, I try and find the funny side of life. During an interaction with shrink Angie, I asked her how to reduce my anxiety when dealing with everyday irritating episodes. She responded that I could treat those events as comedy skits - and so alleviate my negative reactions with the use of humour.

A smart woman is Angie...

 

 

Mister Guy Slingerland...

 

 

Mister Lawrence Jones...

 

 

Street scene at the Gallery March Sundowner ...

 

 

Darryl and Matt...

 

 

Michael John and Michael Lawrence...

 

 

Other Matt with Sons Xavier and Noah ...

 

 

Kate with great niece Zari...

 

 

 

Nanny with Violet...

 

 

Grandpa...

 

 

Daddy...

 

 

Mummy...

 

 

Uncle Alex...

 

 

Miss Imogen Ivy (Big Sister)!

 

Embracing Abandonment

No, I haven't completely lost my mind; in fact, I think my brain may be firing on all cylinders again, after a fairly difficult period. Needless to say, I did require a bit of assistance, which I eventually sought, after much unnecessary procrastination.

My wise oracle and life buoy turned out to be a diminutive psychiatrist named Angie, whom I met in Northam last week. Now, shrinks, I have known a few (apologies to Frank Sinatra) and most of them I have found wanting. Plus, we are now officially paupers and can't afford a private psychiatrist. So when Andre, our GP wrote me a referral to the Wheatbelt Mental Health Unit, I envisaged actually clapping eyes on a quack in about eighteen months. And not having much faith in the outcome.

Imagine my surprise when I was quickly triaged, interviewed over the phone and a face-to-face appointment arranged all in a couple of weeks. Even so, I couldn't muster much enthusiasm before the event due to recurrent disappointment in previous practitioners. I was not looking forward to telling my story for the umpteenth time, watching the shrink/psych putting on their "listening with empathy" faces, whilst I was sure they were planning what to have for dinner.

I ended up arriving a trifle late, as I forgot the entry to the Unit was round the back, not on the main drag. I was not expecting to be greeted by a short, somewhat exotic looking doctor who introduced herself and ushered me into her office where we were to be joined by Huriana (not sure how to spell her name) via video link. Huriana had been the staff member who had previously spoken to me. I was a bit unnerved with two people sitting in, but I decided to just go with the process and see what unfolded.

Angie asked specific questions about my life rather than just let me ramble. We covered a huge amount of ground in less than ninety minutes. We spoke about details from my childhood, marriages, my pregnancy losses and motherhood. We touched on my self harming. We explored together whether there was an underlying reason for my decades old anxiety and depression and how I could help myself smooth out the "mad woman's knitting" of my psyche.

And then she announced her opinion. I had a lifelong terror of abandonment. Suddenly, that light bulb moment made perfect sense. My mother had abandoned all of us throughout our lives. My brothers had, unintentionally, abandoned me. My darling Dad, through unconscious passivity, abandoned us to Mum's chaotic craziness. And my fear of abandonment led me to stay in a bad and unhappy marriage, (for both of us) suffocate my self esteem and only end that relationship when I realised our children were being damaged by us both. I have spent countless times down my well, so afraid Michael would leave me. And most recently, She Who Must Not Be Named has abandoned all her family, leaving me angry, desolate and bewildered. That has been like an open sore that refuses to heal.

Suddenly, my entire life made sense and this was not my fault. Then, Angie started to explain strategies that could make a difference. If I watched my breathing, I couldn't concentrate on unhelpful thoughts at the same time. She's right. I've tried it. She urged me to use mindfulness techniques as a way to circumvent damaging self talk. She has referred me to psychology sessions. This immediately worried me. "What if I don't like the person?" She responded "Then move to the next one on the list". Okay.

She picked up how I try to use humour in my writing. She suggested I record our daily catastrophes like a comedy sketch. I have had years of practice looking on the funny side of life if at all possible. I was almost speechless with gratitude at the simplicity of her solutions to my questions. The only piece of her advice I have chosen not to follow is to take a drug that caused a horrible reaction  about twenty five years ago. I made an informed decision for my own health.

Over the last few days, I have considered how I can change my views regarding my abandonment issues. Loving Mum was complicated but I don't miss her one iota. I hope she may have found some peace. I adored Dad, but I needn't place him on a pedestal. My ex-husband now appears to be happily married to a lovely lady and has rediscovered his family. I am becoming better at vocalising my here and now to Michael without excess waffling. And as for She Who Must Not Be Named, she must follow her own path. Maybe I have served my purpose in her life. I have to try not to grieve her absence.

Tomorrow is April 1 (Fool's Day?) and Stella's unofficial birthday. She will be turning four and those years have been maddening, frustrating, surprising and hilarious, often all at the same time. The East End Gallery is once more spick and span after a rogue thunderstorm early on Sunday morning exacerbated the leaky roof and left puddles here, there and everywhere. Our gazebo, having appeared to be only slightly damaged, was later reassessed as terminal and been taken down. After the rampage, we read the instructions that advise taking the structure down before a storm and not leaving it up for extended periods... Will, our trusty camper suffered a broken vent, which fortunately didn't flood either the kitchen or our bed. He is now recuperating with about thirty layers of Gladwrap across the hole.

We have been joyfully consumed by Violet's arrival, an easier birth for Bron, watching the delight on Cal's face now he is the Daddy of two little girls and Immy thoroughly enjoying her role of Big Sister. The NDIA/S continues to confound and annoy me, but I need to remember that a young man named Alex, our Autistic Superstar is the reason to persevere in my quest to create a coherent team to support him.

So much tension has eased this week. I already feel more confident in myself. I know this is not a magic bullet and I will need to keep working, but a great weight of fear has been lifted from my shoulders. Tonight, Michael and I am sitting in Station House, comfortable as both ourselves and as a couple, and very much looking forward to our northern expedition come June.

 

Yep!

 

 

My ultimate fear all my life...

 

 

I spent my life wishing upon that star...

 

 

I certainly did...

 

 

Useful words...

 

 

 

Practice, practice, practice...

 

 

 

 

 

Alex with Violet...

 

 

Grandpa...

 

 

Mummy...

 

 

Daddy...

 

 

Big Sister Immy...

 

 

Mister Pip and the Birthday Girl...

 

Us and our tugboat.

WHERE On Earth Did MARCH Go?!

I have not written a single word since 27 February. Not one. That last post was full of bitterness and frustration, all related to my struggles navigating the National Disability Insurance Agency/Scheme. No, I didn't fall off the face of the planet nor did I enter into a temporary comatose state (though the prospect of totally reversible unconsciousness was almost on the agenda). In fact, March has been super busy, with appointments galore, the ongoing dance with the NDIA/S, a Gallery Sundowner, a family reunion and the birth of our second divine grandbaby.

I have begun posts on a number of occasions throughout this month. But the world kept turning faster than I could run. Fatigue became my firm friend and I found myself crawling into bed at ridiculously early hours, desperate to sleep well and wake up refreshed...Eventually the truth was out there, staring me in the face. I had not changed my CPAP mask cushion for a couple of months and leakage was depriving me of the required airflow to keep the muscles of my throat open. A new cushion helped alleviate my chronic exhaustion, but there were other elements at play as well.

After complaining about 2022's late and wet spring, I was now heartily tired of the heat. I really am becoming grumpy in my advancing years. I now dislike both the height of summer and the depths of winter. The laundry basket also reflects these extremes of seasons. In hot weather, all items have to be washed after each wearing, due to rampaging Underarm Soakadaemia and Aroma Incredibelus. In winter, I can wear the same brassiere over at least two days, given the absence of the above conditions. However, winter clothing is so bulky that a couple of pairs of jeans, a few shirts, the odd jumper and heavy socks fill the bloody machine far more quickly.

Apart from keeping the dirty washing monster at bay, Piddling and Poohing Pip continues on his merry way, leaving unpleasant puddles and unsavoury parcels all over the house. Last night, one of my worst nightmares was realised as I trod, barefoot of course, into a squishy and smelly offering left in the entry to the laundry. Oh happy day...Hobbling outside, I blasted the squelchy substance off my lowest appendage as well as I could possibly manage with the courtyard hose. Not entirely satisfied with the outcome, I then lurched inside to our bathroom, for the purpose of scrubbing the horrid remains off  with hot water and soap.

Fortunately for both Michael and Paula, they spied Pip's unwanted presents on the lino and did not stand in the messes. On another positive note, Chop has finally welcomed Paula as a bona fide member of our house by leaving half a mouse for her delectation...

Finally, I blame my lack of writing on the fact that last Thursday, I had half my brain removed by the delicious Doctor Daram, my MOHS surgeon to the stars. I have waxed lyrically about his gorgeousness in prior posts. Visits to his rooms are a complex mix of delight, fear, usually some discomfort, laughter and rather a lot of chatting (on my behalf). I think Daram encourages me to talk whilst under the knife so I reduce my amount of colourful language. Anyway, during this latest procedure, the excision on my head resembled an Egyptian eye symbol prior to being sewn up with thirteen incredibly neat stitches. Another Basal Cell Carcinoma was the culprit, an innocuous red dot hiding in my hair. The local quack can take my stitches out two weeks post-op and we will see Daram again in September when I will once more perform an unwilling strip show.

I have given a tiny snippet of our adventures thus far in March. I hope to get my act together again tomorrow and provide a couple of detailed updates that I hope will not bore you silly...

Till next time.

 

 

My default position for much of this month...

 

 Whenever I can! 

 

 

How aged mask cushions don't help...

Whereas a new cushion totally improves my sleep quality!

 

 

Piddles and poohs by a certain elderly Jack Russell are the bane of my existence! 

 

 

How I wish Pip would undertake his toileting...

 

 

Or at least clean up after himself!

 

 

Absolutely!

 

 

Good point...

 

 

Another eternal truth...

 

 

Now pay attention to the above chart, boys and girls - and watch out for these nasty little bastards.

 

 

And this is MOHS surgery, which I had performed on my nose.

 

 

I never waste an opportunity to point out this meme.

Please Read - What Should I Call This Post?

I have been banging around with titles for this post all day. Ones that have jumped into my head have included - does anybody give a stuff/shit/f#*k? So, I am throwing this title out to readers' suggestions who may give a stuff/shit/f#*k. I would be delighted if this post is viewed by more than 10 people. I would be ecstatic if this post actually captured the attention of the mainstream media. I think I am living in Cloud Cuckoo Land, given the amount of interest I hope to receive as opposed to the reality I am anticipating.

This post is all about lack of information sharing, disregard of appropriate and timely responses, appalling decisions and lack of continuity. I could link these issues to the death of Aishwarya Aswath in the Emergency Department of the the Perth Children's Hospital. A little girl died by a litany of failures committed in a state-of-the-art health facility. She may have been beyond saving, but due to her treatment, we will never know. 

We all are filled with outraged horror at this outcome and vow these incidents should never occur again. Except, these incidents do occur, every day. This kind of casual contempt may not actually lead to death, but has major implications for those living with chronic illness and disability.

Let me give a few examples of this behaviour that has caused Alex and me extreme stress over the last week -

• Alex's sleep study report confirming severe obstructive sleep apnoea was not forwarded to his respiratory specialist.
• Alex's MRI results related to his frontal lobe damage have not been forwarded to me, despite Alex and I presenting a document to his GP last year that he gives permission to release all reports to me.
• In fact, none of Alex's recent reports have been e-mailed to me. When I protested to his GP's office, the excuse I was given was "But there are so many reports!" Give me strength.
• The commercial arm of the Sleep Study organisation sent Alex what I would consider a "sales pitch" of CPAP devices and service . Given his difficulties with processing large chucks of written information, he immediately descended into panic.
• No medical professional has attempted to find a connection with all Alex's diagnoses. He has a number of obscure conditions, which in my brief research, appear to have a genetic component. If this is the case, the NDIS needs to recognise Alex's issues as conditions rather than "illnesses" which should alter his funding model. The funding is not the issue. The funding currently has such a narrow scope of delivery that we can't fund the services or devices that Alex requires.
• The NDIS has maintained its persona as the Department of Stealth and Total Obscurity. Documents are routinely lost, responses are non-existent or nonsensical, emails and phone calls are not returned, and service delivery is patchy. In the three and a half years that Alex has been a participant in the NDIS, we have yet to receive a satisfactory plan. 

Here is a current list of Alex's diagnoses as sent to Minister Shorten this afternoon -

• Tricuspid Atresia (a congenital heart defect)

• Asthma

• Pseudomonas infilltration of his lower left lung

• Frontal lobe damage caused by a stroke as an infant, only discovered through MRI last year

• Low muscle tone

• Scoliosis

• Autism

• Difficulties with processing of language, both verbal and written

• Chronic Anxiety

• Keratoconus (a disorder which causes conical corneas and may have a genetic component)

• Severe obstructive sleep apnoea (which may have a genetic component).

   

  I have also repeatedly requested increases to Alex's Support Coordination, with tangible reasoning. Given Alex's level of anxiety, he often requires the assistance of either myself or his Support Coordinator to defuse a potential panic attack. Alex currently has either eight (8) or twelve (12) hours per annum for Support Coordination contact, the conduit between us and the NDIS. Please think about those figures for a minute and consider if a young man with his complex needs has enough Support Coordination. The service provider that manages his Support Coordination has only ever known one case with lower funding. 

  Here is a further excerpt of my letter to Minister Shorten -

   I have been told by a NDIA Local Area Coordinator that Alex is far too complex for a base LAC and this should be reflected in the amount of Support Coordination funding he receives. His previous Support Coordinator Ms Shannon Kirk repeatedly requested more hours to be funded, including dot points to illustrate how thirty-nine (39) hours per year would be utilised for Alex’s needs.

   And this about the NDIA's record of lost documents and failure to respond to legitimate queries -

    I was recently contacted by Jayne Jones, who purported that she was from the NDIA, supposedly checking the effectiveness of Alex’s current plan. She asked me to submit a Carer Impact Statement again. My previous statement, submitted in 2021, was nowhere to be found. She also asked me to resubmit Alex’s MRI reports again, as they were nowhere to be found. I am yet to receive any feedback, including if she received the documents, which I asked in writing that she do.

  Two or so years ago, I repeatedly requested the NDIS fund reverse cycle airconditioning in Alex’s unit, due to multi-factorial issues including inability to recognise his temperature, the serious risk of severe asthma and chest infections if he became too cold, the link between cold and his experience of cardiac arrhythmia, a significant drop in his daily functionality due to cold and his uncertainty over appropriate clothing.

  We were rejected three times and in my opinion, the explanations were totally arbitrary. Fortunately, a benefactor paid for Alex’s airconditioning. We are now in debt to that wonderful person for the sum of $4000.

  We are now contemplating his urgent requirement for a CPAP machine for his severe sleep apnoea. We currently have no idea if the NDIS can fund this device, which is essential for Alex as soon as possible. 

  We are really lucky that Alex has the services of an superb independent support worker on Saturdays. We would like to access more hours for Alex's needs to relieve my ongoing stress, but so far, this has not been possible. We live in hope...

  So, there is the reality of the situation for Alex and I day in, day out. Unlike Aishwarya, Alex is unlikely to die tonight. However, with untreated severe sleep apnoea, and his other life long conditions, I do worry about waking up and discovering he has died because of disjointed services and lack of information sharing.

  So, can anybody out there go in to bat for Alex and me...
  

   This is Alex -
  

  
  
   

  
  

  
  

 

In And Out...And In And Out...

Ah...retirement! Beautiful one day, medical appointments the next! Another day in paradise right here in Heavenly Beverley. Summer has hit us like a Pan-galactic Gargleblaster, without the velvet. We all moaned about the extended cool spring, so the universe has had the last laugh, with most recent days hovering around the old century mark. I used to love the hot weather. Now, I am in love with ceiling fans and air-conditioning in the heat and heating in the cold.

Yesterday, we launched forward towards the Big Smoke with two tasks to complete. These were somewhat tiresome appointments that illustrate becoming older beautifully. 

The first errant was to a lawyers' office in West Perth. We needed to have our wills renewed as our needs have changed to some extent and our previous solicitor may well still be in jail. We'd never considered him to be criminal material and neither apparently did any of his other clients. Our latest, and hopefully law-abiding pillar of the legal world, noted that the clients he had inherited all just considered the fellow to be a little odd or eccentric. 

Our meeting was painless to all except our hip pocket. Because of Alex's special circumstances, our wills have ballooned from a simple and straightforward three pages to a thickness akin to a dictionary. That was an "In". The only "Out" was the removal of a previous beneficiary.

The second item on the agenda was Michael's CT scan on his abdomen to search for any nasties that we sincerely hope aren't there. We have reached a certain age where one test seems to lead to another. And we are paying for all the indiscretions of our younger selves. Michael is aghast at being reduced to one glass of red wine a night for six weeks to give his fatty liver a rest. He is even more aghast at the concept of consuming three or more serves of veggies every day. His idea of enough is plenty of potatoes with as minimal green stuff as possible. The boom has been lowered.

As for me, I am cheering at the delightful thought of another removal of a skin cancer - this time from my noggin. The biopsy performed by the delicious Doctor Daram confirmed the result - another BCC (basal cell carcinoma) hiding under my hair. Who would have thought that barbecuing oneself every summer until I was fifteen would lead to such a later fun activity? Fortunately, my head is being assaulted in early March when I can still get away wearing a hat.

Michael's CT was efficiently performed with absolutely no clue as to the results. The dye went "In" and the immediate sensation suggested warm fluid was heading "Out" Luckily, we are both aware that the feeling one has peed oneself is just a side effect of the test.We now wait with bated breath for the Report.

This morning, I enjoyed a most lively conversation with Pam, Receptionist to the Stars at the Vines Medical Centre here in town. Yesterday, she had left a message that since the COVID boosters were not "In" the practice yet , our stabbings for tomorrow needed to be postponed. Funnily enough, the boosters came "In" this morning, meaning they can be injected "Out" into our upper arms tomorrow after all. If a miracle occurs during our visit to the quacks' office, Michael's CT results may be "In" as well!

For some obscure reason, the Who's "Squeezebox" jumped into my head as I was considering where the hell this post was going. Probably all the references to "In" and "Out". Pardon my complete ignorance, but how was I to know that a squeezebox was slang for a woman's vagina as well as for an accordion? Without a clue at sixty-one years of age, one of my favourite songs is all about quite explicit sex!

Who remembers a quaint and mildly amusing movie named "In and Out", about a teacher who is outed as being gay, when he does not believe himself to be so. Inspired in part by a speech in the uber-serious Philadelphia, the movie explores sensuality, sexuality, exclusion and triumph in a reasonably light format. I had no idea that Joan Cusack, the lead female actor was nominated for an Oscar. Now I will have to watch the movie again.

Finally, how many others are enjoying the fabulous adventures of Bill and Sheila, along with their guides to "free camping and good stuff". Artist Michael Jones has created an iconic retired couple in a series of wonderful mini paintings. They are camped somewhere in their caravan on a secluded beach, though they are close enough to a town for Bill to be retrieved from the Bowling Club by the local coppers. Bill, whilst giving great impressions of his manly virtues, seem to spend most of his time on a lilo, asleep under the newspaper. Sheila is the responsible one, alerting Bill to snakes, spiders and the high tide, whilst she performs rather a lot of the hard yakka at their site. Do yourselves a favour and grab a peek of Bill flat "Out" on his back whilst Sheila jumps "In" to carry out the necessary duties.

 

 

I love my Nannie naps!

 

 

This is our ongoing mission!

 

 

How I'd like to compose my will...

 

 

Rather than a tome heavier than "War And Peace"!

Well hello CT!

 

 

Bummer!

 

 

Am I the most gullible person in the known universe?

 

 

Is he in? Is he out?

 

 

 "Is This Yours?"

Bill and Sheila forgot about the king tide...