Life With Lucus

I bet you have no idea why I am using the name Lucus and you’re busy googling who this guy is right? Who is Lucus you may ask? I bet you are thinking Oh no, this is going to be one of those articles about some guy. But for the sake of this article I have re-named my chronic illness named LUPUS into the name Lucus, hoping that by giving it a human name people will be more acceptable to talk about it. People don’t often like to talk about how unwell they are and the healthy tend to feel uncomfortable about subjects like this. It is a sensitive subject for some so as I write my story, I will call him Lucus just like I would explain angrily about some old friend that turned into a monster!

so who is Lucus? or should the question be, WHAT is Lucus?

Lupus, or what I like to call old man Lucus, is an autoimmune disease that targets your organs, tissues and cells. He basically tries to kill them off and he can  make you very unwell. Lucky me! Since I was a little more than the usual hyper-active 10-year-old, Lucus came and kicked me in the joints and I suddenly aged 60 years and turned into an old grandma.

There is such a large variety of symptoms for those who have met Lucas and anyone who is unfortunate enough to have Lucas in their life will have different side effects to him, but some of the symptoms that I’ve had to cope with while fighting old man Lucas includes:

  1. Joint swelling: This is almost like people with Arthritis causing Inflammation & Pain
  2. Fatigue
  3. Skin rashes: red and blotchy patches including a nice Butterfly rash to my face
  4. Mouth lesions
  5. Photo-sensitivity: Rashes when exposed to the sun
  6. Hair loss
  7. Kidney problems
  8. A Low functioning Immune system.

Not to mention the lovely side effects that the medications do to your body. At the age of 11, I was given a beautiful round “Moon” face which was caused by Lucas and the medications. That wasn’t the nicest thing to have at that age when you’re still in primary school with kids so curious as to why you had all of sudden gotten “fat”! Being a kid wasn’t easy I tell you, and being sick was hard to explain to other kids!

Lucus can be really nice and settle down sometimes, but other times he can be a real asshole! He is very unpredictable as he changes his mind daily.
Unfortunately, there is still no cure for Lucus and he can only be controlled by a long list of medications. Although these medications can help manage your symptoms, these medications do not suit everyone because Lucas effects everyone differently, so it is a trial and error for quite a while trying to find the right treatment that is effective for each individual.
At a young age it felt like Lucus would be around to stay forever or at least until there is a cure that is..
Lucus is like that one best friend who you’ve had a massive falling out with but still seems to cling around, disrupting you and your family.

In 2007, I was asked to be a bridesmaid for my cousin’s wedding in Adelaide, Australia. What I thought was just a burning sensation on my tongue at the time turned its ugly head and put me into the Adelaide Royal hospital. Now a bit of controversy as to whose fault it really was, I still honestly believe that the hospital stuffed up by giving me a dose of adrenaline for my apparent allergic reaction. I was discharged later that day because my headaches were gone but a few hours later I burned up, suffered from a seizure and got sent straight back into the hospital. Later on and after a CT scan, it turned out that I had a bleed to brain that was caused by the Adrenaline. So after a month in Adelaide hospital I finally got flown back into Melbourne. The ambulance drove me straight to Monash Medical hospital and there I stayed for 6 months.

During that time, I had 4 brain surgeries!

I had a shunt put in ( which is a tube running from my head to my stomach draining fluid)
But a few weeks/months after having the operations, the shunt in my head would either get blocked or infected, which would cause too much pressure in the brain and would require another operation. I had lost all speech and movement. Every time I was prepped to go to surgery, the doctors would take my family aside to give them a run down of what is happening.  Basically, and not in these exact words they told my family that I was “going to live, but would not be able to talk or walk again”. I can’t imagine what they would have been thinking and feeling during that time. I feel lucky that I was unconscious most of the time and had no idea what was going on. Only now do I know from stories re-told many MANY times again that I was suffering and in constant pain. I would constantly get feverish and burn up. I repeatedly set off the hospital emergency alarms. “CODE RED or CODE BLUE” for different reasons. All I know is this meant. “Get everyone out of the room, we have to get her heart pumping again”. And just like in the movies they brought out the defibrillator machine. This one time my heart had stopped for 3 minutes. I had surely died and came back to life..

After the 4th operation, I was FINALLY given the all clear, I was going to be fine!
I needed physiotherapy and occupational therapy because I needed to learn how to string a sentence together and learn how to move my short little legs.
I went home after 11 long months, but my rehabilitation wasn’t quite over yet. I had to join a community rehabilitation centre that was close to my house. I hadn’t learnt to walk yet and I was being pushed around in a wheelchair which I thought was so cool at the time! I spent a few months learning how to side step and walk, building up my leg muscles. I had to do more occupational therapy because my memory was terrible. I had written down small goals of wanting to go back to finish my bachelor degree but in order to do that, I would have to remember what I had for breakfast that morning first.
I could not remember anything for more than a couple of hours, so how was I suppose to remember what I had learnt in a lecture if my brain was so slow?

Six months of rehab later and after I got home
I had finally taken my first steps!
 (Greatest day of my life)
And a year later I was enrolled back into Swinburne university to finish off my final 5 subjects that I had left behind for my crazy clubbing life. It took me a year to finish my course and I finally graduated. YIPEE!

After my degree, my Mum who was now super over protective wouldn’t let me work due to also being diagnosed with epilepsy, hence why I wasn’t allowed to work. I was upset to say the least. It took me 9 years to complete my bachelors! And that time also included the time spent in hospital and then to finally be told you can’t work!!! What was the point then? But…that year in October, I received an email from Swinburne inviting me to an information day for Post-grad courses and I was eager to go. Staying at home was getting frustrating. This is exactly how I got into the Masters of Marketing course, and there I was sitting in my E-marketing class about to finish the year with a Masters program under my belt!

I can still remember the doctors telling my family that I wouldn’t be able to do much after the stroke I had. 95% brain-dead they told my family. 95%!!!

I had proven them all wrong.
Although completing my masters degree was a major accomplishment I still had goals that I was reaching for. My plan was to start charity work and to donate all funds to the Lupus research centre at the Monash hospital so that I would never have to hear a Lupus patient go through what I had to. I wouldn’t wish it upon anyone. I worked towards my goals and it was after I finished my entrepreneur subject that I decided to open up Lupus Victoria which I am proud to say is a fundraising organisation that advocates for those with Lupus. All donations go towards research to find a cure .

After this whole journey of mine, I must say that my stroke was a blessing in disguise. If I hadn’t had my stroke, who knows what I would be doing now. I wouldn’t have even finished my Bachelor’s degree, Master’s degree or opened up Lupus Victoria.

If you have ever had the disadvantage of being diagnosed with Lupus, and if you are ever struggling, I hope this story gives you the inspiration you need to fight.
I hope my story helps you realise that you are not alone. There is always someone struggling to the same degree that we are.  If you stick with the pack you’ll always find comfort and If you don’t have one, go searching. We’re everywhere!!

 If you would like to donate to the Lupus Victoria to help us find a cure, please head over to

https://www.lupusvictoria.com/

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