333 days to Antarctica - “We Can’t Be Beaten” Rose Tattoo

 

Approximately 17 minutes reading time

333 days to Antarctica - Skeleton Hands

“Doing the best at this moment puts you in the best place for the next moment” Oprah Winfrey

WOW, what a week.

Schrodie is getting better with the help of his medication and I am happier. He somehow acquired a weird plant based bacterial infection on his penis and in his bladder. It could have been picked up from a grass seed or long grass or injury, so we avoid these as best as possible. It might have been acquired from a dog that licked him, his penis, on our walk, before I had a chance to pull him away. Only short walks every two days at the moment and we both miss our long, beautiful walks in and out of the bush and countryside. Luckily the infection was identified and there is effective medication to treat him. I have been taking him to our wonderful Vet and his staff who love Schrodie as much as he loves them, every two days to apply a topical antibiotic inside his sheath. As my skeleton hands aren’t stable enough to safely undertake such a delicate application, we go to the vet. Thank heavens I saw the blood in his urine when we were out walking and he peed on the pole and bricks. We went straight to the vet on Saturday for an emergency consultation for x-rays, urine test and examination until Monday when further blood tests could be undertaken. My instructions were to watch him carefully and contact the vet if required, specifically if his condition deteriorated. Then whilst out walking at Bondi Beach the next day, with Murphy and my friend, there was blood on the grass upon urination.

Schrodie has kept me alive so many times on the most bleak of days. He has made me smile and laugh when I never again thought it possible, sat and lay with me when I was unable to move, so there is nothing I would deny him for his health and well-being or happiness. My beautiful, sweet angel has not deserved any of the terrible things that have happened to him. He suffered because of what has happened to me. Even at his worst he never shows any signs of pain or complaining. I watch my strong, brave, stoic boy like a hawk. I never watch his pee. Seeing the bloody urine was a complete fluke, definitely fate intervening. When I adopted Schrodie I made a vow to love him and look after him the best I could, Always. I will not break my vow. A lifetime of bread and water to sustain me, if required, is worthwhile; Always. He’s much more spritely and we have been having fun playing again over the last few days; inside chasings and fetch. Murphy was with us for a fun and challenging week.

I also went to design my new kitchen, bathroom and laundry last week, this is very exciting but challenging. The designer made suggestions and created the plans. I was not comfortable signing them on the spot. The kitchen design is off balance and some of her suggestions were not consistent with good design so I am making amendments. Most importantly, the imbalance of the design would drive me crazy and sad as I find it awful and infuriating. I was grateful for some of her sound advice. I hope I will be happy with the designs and function of my kitchen, laundry and bathrooms upon moving home.

Tile selections were made for the wet areas and I have indulged on beautiful upgrades at a minimum cost for my back splashes and the powder room floor. Outdoor areas tiles are the same as the included, beautiful grey-green bathroom tiles I selected. I have chosen beautiful Australian made tiles throughout the house with colours very different to what I had originally envisaged. Staying within budget and the builder’s options has been the significant factor in my choices. Once again, I have stayed with the builder’s included flooring options and chosen a semi-gloss, coffee stained bamboo for the rest of the living spaces, replacing my beautiful teak floors.

My plans are with our local Council for Development Approval. My original four bedroom home had a twenty two-and-a-half thousand litre water tank which was changed to one hundred thousand litres, which is approximately five times more than previously required. I was horrified when the builder told me of this new requirement because of cost and space issues to accommodate this water storage requirement and water tanks. My home has no mains connection for water or sewer, it is proper country. Immediately upon hearing this news I rang Council to discuss this requirement. During discussions I asked about the potential to reduce the amount of water storage and raised the issue of my fresh-water bore. As I have a water bore on site, I was able to reduce the storage requirement to store a total of fifty thousand litres of water, which includes a separate and stand-alone ten thousand litre water tank for the RFS (Royal Fire Service).

The specific RFS water tank is costing approximately seven thousand dollars and taking up eight square metres of yard space.  I am happy to provide the water tank for the RFS however I am unhappy and dismayed that as a bushfire victim this becomes my sole responsibility and financial burden. Water tanks for the RFS are a community responsibility and costs need to be borne by the community as a whole, with adequate tanks placed strategically around the community, not borne by individual land-holders. I object to this requirement when my neighbours do not have such a requirement to the RFS and community. Even though I lost everything, including my home to bushfire because the RFS were unable to save my home I am punished with this requirement, which will potentially save my neighbours’ homes but didn’t save mine and they will not afford me the same safeguard. This is wrong.

In a random conversation with a man last week, I was also told that it was the RFS decision not to put out the Morton bushfire around Christmas 2019, as this fire started on the 24^th December 2019, Christmas Eve. My brother-in-law and I saw it start on our Bushfires-Near-Me App with which we had all become obsessed. Merry Christmas and Happy New Year indeed! The fire could have been extinguished before it crossed the Shoalhaven River that caused the devastation to me and my local communities. Everyone living through this nightmare was traumatised, with those of us personally devastated were traumatised in a worse and unimaginable way. I am appalled and horrified by this information. I live my life and Irony lives right alongside with me. Ha!

This decision also caused countless RFS volunteers to put their lives in danger on an ongoing basis for months that could have been avoided. RFS Volunteers are Heroes whose lives are apparently disregarded and disrespected by the government, as are the people living in our community. To me this news is terrible, appalling and horrifying. The Government needs to be held accountable, especially as they chose to wrongly withhold tens of millions of dollars raised by Comedian Celeste Barber that was raised internationally to go straight to the bush fire victims. Celeste is hilarious. Celeste Barber is a Hero for what she did, raising so much money. I was happy to learn that the Government was being held accountable for its lack of effective EPA (Environmental Protection Agency) surrounding land and bushfire management. I had not thought about bushfires and their management being a government responsibility. The EPA makes the water and septic requirements for Development Applications. It seems that this knife is currently only cutting one way.

The water tanks alone are currently costing me forty thousand dollars. To meet storage requirements, bush fire ratings and space optimization I have found and purchased five, ten thousand litre custom-made Colorbond water tanks. Each tank measures just over four metres in length, over two metres in height and less than one-and-a-half metres in width including a concrete base. Water tanks will be placed in a line along the boundary fence. Problem solved at great expense. Position is yet to be approved by Council.

Now I understand why so many people I have spoken with throughout my journey have advised me to sue the government and my employer for what has happened to me because of this bushfire. Supportive as my employer initially was, they are now bullying me into changing my employment status to casual to dissolve my employment because I am still not strong enough to return to work. I loved my job and the customers. This is a very physically demanding job with the stock management and even on registers the physical demand on my body and lungs, voice standing in one spot serving a few hundred customers a day, moving and packing their various alcohol purchases notwithstanding the extra dangers to me and my immunocompromised, immunosuppressed condition with the direct threat of Covid-19. With respect to my situation having being critically ill and not expected to survive, countless times over the entire last year and my employment, “They want to clean-up their books” as I was told by the Store Manager, supported by the Area Manager. Management knows exactly what I have suffered and I was the only staff member in the Company impacted directly by the bushfires but they simple do not care about me. I am unimportant and inconsequential, after seven excellent and committed years of service, as I have unexpectedly and importantly learned.

If I had evacuated my region when the fires started and became most dangerous, my health would not have suffered and I would not be in this current situation. Alcohol is not essential to life and the Dan Murphy’s store where I worked should have been closed. The decision to keep the store open was profit driven not safety driven as the Christmas and New Year Season is the busiest and most profitable of the year.  I contracted the pneumonia in early December when the air in the region was thick with smoke and had been for weeks. The warehouse where I worked was filled with thick grey smoke every morning and day when I went to work to fulfill my part-time employment requirements and support my employer and community. The smoke would dissipate over the day but remained as did the ever-present and toxic stench of fire. I am horrified, appalled and greatly distressed by my current situation and the loss of my livelihood. This distress is directly impacting my health and well-being. Apparently three months is an expected time-frame to recover from such horrors as surviving bushfire, losing everything and barely surviving multiple critical illness’ and total disability, or so I have learned the hard way. Luckily, I am incredibly strong, resilient and resourceful. I have survived the worst and my focus is changing as my priorities change. For the entirety of 2020 my sole focus was surviving. I will not be beaten! The Rose Tattoo song “We won’t be beaten” seems to be stuck in my head with a long playlist of my other current and long term musical anthems.

Sadly, Covid-19 changed the focus on the world in the most terrible way. The way we all live and interact with each other has changed, possibly forever. We aren’t allowed to dance publicly anymore or touch each other easily and this to me, is a great tragedy. I remain optimistic that fun and personal freedoms will be restored throughout the world affording us all the opportunity to live and interact safely and easily, naturally with each other, once again. That we will no longer be forced to live as we now do, in this, our Brave New World. For me this has been added layers of danger, discomfort, isolation and for the first time in my life I have felt loneliness even though I am fortunate to speak with many loved friends and family daily and best of all I have Schrodie to share my life.

I almost lost my life countless times last year as a direct result of the bushfires, as well as staying to support my employer, Dan Murphy’s the Woolworth’s Group and my community. I have learned the reward for my loyalty is naught.

Last week I had my very first, impromptu guitar lesson. My teacher is very calm and patient and agreed with my view that the guitar will be the best instrument to build up the strength, control and dexterity in my hands. Playing the guitar will build the countless, tiny, specialist muscles in my hands as well as my wrists. I learned to strum, play the C chord and G chord. Apparently I am not completely useless or unteachable which is so much better than I had anticipated, phew! For me, this is hand therapy rather than music inspired learning, although this is a happy by-product. Johnny and I are happily becoming acquainted and I remain optimistic about our blossoming relationship.

One of my hand therapists was so amazed by the increased strength and capability I have in my hands over the month since I had last seen her. My exercise regime is intense and I work incredibly hard even though I slowed down over December and January. I will see her again in April. I am happy that I can now do up buttons, even if it is a painful, frustrating process for me. I can use zippers effectively even if not easily. I can turn the front door key although it is a struggle. I can use door knobs if not easily. Opening the milk, certain jars and containers with and without tools is now possible.

My Freestyle Libre blood sugar Sensor containers are now opened with a twist or few of my hands rather than a dangerous, long operation using knives, scissors and more. Gratefully, I am able to insert these safely in my arm on my own which spares me from finger-pricking my nerve-damaged hands to check my blood sugar at least three times a day, usually more. I cannot yet open the Methotrexate bottle but neither can the Chemist, easily. So far, I am able to now pop my medication from its foil pouch, still a challenging task and open most containers and bottles.

Excitedly, I can now squeeze open a peg but not as well as required between my index finger and thumb. Scissors can now be held well enough to cut open some plastic packaging. Zip lock bags are still a nightmare challenge to open and close but no longer the same agonising nightmare of previous months. I manage a little more easily, thank heavens. Eating with proper cutlery is now possible and much easier than before, however cutting through a steak can still be challenging. I no longer have the finesse I was trained to have whilst eating and doing everything else. I expect this situation to be temporary.

Much of what I do is done differently and creatively to make up for my current challenges due to my still compromised body. Most importantly, my strength and capabilities are improving daily as is my nerve damage and I am ever grateful.

Previously I have sustained several cuts and injuries, not helped by the lack of feeling in my hands and fingers. I have happily regained full-feeling in all my fingers and both my hands. There was no expectation that any let-alone all feeling would return. My Rheumatologists and other Specialists cannot believe my recovery. My feet are almost fully recovered. The sensations and feeling are not yet as they were but returned nonetheless. There is still nerve pain and discomfort, mainly in my feet although my strength is returned, no doubt due to my exercise and walking regime with Schrodie. The muscle atrophy is improving throughout my body as a direct result of my exercise, physiotherapy and occupational therapy undertakings.

Upon seeing my Endocrinologist last week, I learned that what I thought was a paunch, being the fat around my belly, for the first time in my life is actually due to insulin not normal fat or a result of over-eating.  When I showed my Endocrinologist my new muffin-top I was told not to inject insulin in my belly anymore. My Specialist told me that was I thought was fat was actually caused by the insulin. I protested that for the first time since I was diagnosed in October 2007, the day before International Diabetes Day. Once again my friend irony visits; I had a layer of fat in which to inject insulin. This had always been a problem for me as I had no fat on my torso until October 2020. I used to inject in my thighs but since August 2020 just before my hospital discharge, a nurse had injected my daily Clexane to avoid blood clots as I was immobile, into my left thigh, dissolving the fat around the injection site, leaving me with a major crater in my thigh. The insulin also created a distortion in my thigh though not really obvious enough to be problematic. Hopefully this fat will regrow and fill the crater. Due to the months of bruising from all the injections and high-dose insulin regimen I had needed since June my body has become disfigured and I was forced to inject into my belly. C'est La Vie. I can't change it so I accept it and don't think on it anymore. Mostly I succeed.

My body thankfully works and is no longer emaciated and malnourished or battered and bruised from illness and treatments. I must now inject my minimum four doses of insulin, just reduced from five shots a day, with two types of insulin not three, into my sides and back. I am tiny and four insulin shots a day is a lot as I lack adequate injection sites. I hate having type-1 Diabetes. I wish I could make it disappear. I am excited that pioneering technology and medical treatments are being developed to eradicate humanity of this most terrible disease. Hopefully they will also be able to cure animals suffering from this disease. Mine is okay and has not damaged my body and I pray it won’t but the horrible reality of this disease is that it always gets you somehow, in the end. I aim to break the expected end-fate. I am fine and always ready to die but I don’t want to die a horrible, drawn-out, agonizing death to type-1 insulin-dependent Diabetes or ANCA Vasculitis. My Endocrinologist said that the relatively small lumps of fat around my belly will probably not disappear but I remain hopeful.

The only thing that made me feel better after being treated by negligent Specialists who were only interested in their $400 per fifteen minute consultation fees and misdiagnosed me and I ended up critical and practically dead in Prince of Wales Hospital Emergency with a blood sugar of 47.9 was learning that the gorgeous Brett Michaels, lead singer of Poison and the beautiful Halle Berry, both of whom I am a fan, were both living with Type-1 Diabetes. Since then Halle Berry’s diabetes disappeared. Brett Michaels has been type-1 since childhood. Apparently Halle was misdiagnosed with type1 but was actually type-2. I have been checked several times over the years and have also been told that I don’t look like I have type-1 or type-2 Diabetes. Lucky Halle Berry who is now cured of her Diabetes, maybe I will get lucky as well. At diagnosis reading interviews by Brett and Halle about living with type-1 diabetes left me hopeful about living a good life. It is hard but possible. It makes me sad when I come across people who introduce themselves as Diabetic. I am not defined by this condition, not even a little bit. Unfortunately it is a part of my life, for now. This is another reason and motivation for me to be physically fit and strong, as much as possible. 

I will do what I can to restore my body. Even though I am desperately sad with these impacts upon my body I stay optimistic but most of all I am grateful to be alive and able to function and live independently, challenging as it is each day. I still live a good, fun and joyful life, how lucky I am indeed! All the Occupational Therapists and Physiotherapists I have worked with since July 2020 have told me that I am still incredibly strong at my core. The frail, broken skeleton rebounds because I was fit, strong, healthy with a muscular, toned body before this happened to me. I cannot help but think of Joseph and his coat of many colours from The Bible's Old Testament. In Joseph's Dream he saw that the Pharaoh could save Egypt and it's people by saving the crops from the seven years of plenty to ensure their survival during the following seven years of famine. This parable has stuck with me since childhood and is always a consideration in how I choose to live my life. Live in the moment whilst ensuring a level of security I can afford for my future. This has saved me from ruin countless times. I have still had all the fun and adventure I have wanted and needed in my life. I always give myself at least one indulgence to keep me happy. Everyone closest to me knows this about me.

Peeling open food containers is now possible, although a long, slow and painfully frustrating process. Snap-lock bags which are still a nightmare can be managed now by opening and closing, albeit often creatively. Showering, washing my hair is easier now as is dressing myself. This is a welcome relief. I can easily manage a hair elastic to put up my hair. My hands are stronger but the muscle atrophy is still severe in my hands, arms, legs and feet. My skeleton hands are better as is my hand grip and pinch strength which were previously zero. I am optimistic and have much hard work ahead of me to recover fully, or as much as possible.

333 days to get my skeleton hands as strong as possible and back to full recovery is not a long time. I will continue to work as hard as I can so that I can safely travel to Antarctica, withstand the travel and harsh conditions, especially the cold which currently impacts my comfort and capabilities. I want to kayak on my own in Antarctic waters and take beautiful photographs as well as do everything else that I want and need to do during my adventure of a life-time. I will load some photos to show you my skeleton hands and feet.

If you have any questions, please feel free to ask in the comments section below.

In the meantime, have a great week and see you next Sunday or as close as possible.