Katies Run
Donation protected
Katie came into our lives only four short years ago, the first day I met her she had a beautiful aura about her, she was polite,she was warm and just a happy and genuine person to around, from day one we clicked and off the friendship grew . It wasn't until months later that Katie mentioned this thing she had lupus, I had never actually heard or known anything about lupus before then , admitingly I originally just assumed it was a skin rash!! Well how wrong was I! one day I saw her and she looked like she was in so much pain her face cracked, her hands were cracked but there was Katie again "I'm sore , but I'm fine!" That night I went home and read up on lupus and actually understood what this lupus thing she has , what it really is . No cure . As months and years have gone on Katie is in and out of hospital, flaring up , getting treatment, it calms down , it flares up again and so the cycle goes ..... yet she doesn't cry for pity , she doesn't sit there feeling sorry for herself and she constantly still puts everyone else first , as if , as if this is not the time most of us would just throw the towel in and cry!!! I would , you?? Working full time, looking after her precious little gift Lexi and still being the best wife , daughter, sister and friend anyone could ever ask for , always a phone call away, nothing's ever hard , shes just purely unselfish and kind, she's a true soldier and soldiers deserve to be recognized ! So we would like to ask you all to spread the word about lupus and donate to this fundraiser it's purely just to give to Katie to pay for her medicine and some of her treatments , we just want to take the pressure off and give something back to her.
Hairetiquette usually sponsors mick Ivakovic on his Melbourne marathon runs , so this year it will all happen once again but this year, we want to do it on Katie's behalf, mick will run the marathon as if he's Katie the more donations we get the more we dress him up to look like her he's willing to go as far as the donations keep flowing .
Let's all get behind that line and run or walk and support each other just as Katie does for everyone else . Let's give her something back!
Details are below , anybody can enter and join us . register early and we hope to see you all at the starting line .
All donations collected will be handed to Katie via Cheque @ Hairetiquette on 21/10/17any more info required please feel free to contact mick Ivakovic or Hairetiquette on Facebook
http://melbournemarathon.com.au/events/10km-run/
Katie's story
Katie Bukovac, I am 29years young! I was diagnosed with SLE (Lupus) the day before my 21st birthday.
Walking into the doctors, I sat down and started thinking of all the horrible things it could be. Not knowing much about Lupus, (Other than the research I had been doing over the last 2 days) I was praying it was nothing major. The Dr proceeded to tell me that the levels of my blood tests all indicate Lupus and the systems were the same. It was at this time that I was diagnosed with SLE (Systemic Lupus Erythematosus) or better known as Lupus and my whole world was about to change.
I was referred to The Royal Melbourne Hospital to see a specialist. They started treating me on low dosage steroids called Prednisolone. I was given 5mg and sent on my merry way! They told me to go back to my local doctor if any symptoms came back and that they would see me in a year to see the progress. I thought "Wow this isn't so bad after all!" Little did I know, a month later, I would be sitting in an emergency bed. Going out with my friends started to become a challenge. I was no longer able to go in the sun, so sunbathing and going to the beach was out of the question. Even going for walks or just really doing anything outside was a no go zone I remember being really tired and physically exhausted. Not the usual feeling but to the point where I couldn't get out of bed. I had a stabbing pain in my leg just below my knee. (Imagine growing pains that you had as a kid but 1000 times more intense.) I called for my mum and started to cry as the pain was unbearable. My mum took me straight to the emergency department at The Northern Hospital where they did tests and could not find anything. The doctor thought it may have been a blood clot but the tests didn't show any. I was given some morphine and monitored overnight. Nothing was ever found. The doctors upped the dosage of the steroids and sent me home the next day. Over the next couple of years, I started to become sick very easily. A common cold would turn out to be the full blown flu. A chest infection would be Bronchitis, a sore throat ended up being tonsillitis. This is because the medication I was on, is an immunosuppressant. Which means they are drugs to stop my immune system as that is what was attacking me. So naturally, I became a lot sicker easily. This was many hospital visits and stays and a lot of antibiotics. In 2011 I noticed that my Lupus started to attack my skin. It started on my right cheek and looked like a tiny red spider web! I went straight in to see Mandy and she admitted me straight into hospital for 3 days. I was administered, what the doctors and medical staff call a "Pulse" which is a high dose of steroids (Prednisolone) through a drip. 500mg every day for 3 days. would be laying there in constant sweats and my heart rate was through the roof! This, however took away the rash on my face instantly. "Thank God" I said to myself. But almost 3 days after being at home out of hospital, the steroids really started to kick in. I couldn't get out of bed. My muscles were swollen and tender and my joints were stiff. I sat up in bed, which took me 5 minutes to get into a seated position, and turned my leg to hop out of bed and WHAM... I tore my hamstring. This was the scariest thing I had ever dealt with as I felt paralyzed to move. I was scared to try and move in case I did some more damage. We called the registrar nurse and told her the case and she said it was part of having the "Pulse" and to take some Voltarin and to rest. For me the hardest thing was trying to explain this to my friends who were concerned but could not see any physical damage. I should have been a healthy 24year old out enjoying life, partying and being able to do normal things, but instead I was an ill, crippled, limping 24year old who had trouble getting a pair of shoes on or getting dressed or even going to the bathroom. I would get these swollen puffy balls on the bottom of my feet and wouldn't be able to walk properly. I would get tired really easy and just want to go to bed. I had 3 more hospital stays throughout that year as the rash kept coming back on my face and also started on my hands. The Doctors did a biopsy on my hand and it was found that I had Anti-phospholipid Syndrome caused by the Lupus. Which meant blood clots and also that I would most likely have miscarriages in the future. My heart was shattered as I always wanted babies and the thought of not being able to carry a child devastated me. My weight gain was a huge part of my lupus. The steroids just made me swell up to a huge balloon! I started to become really self-conscious. I would hide my face with make up to cover the rash. It was only a little red on one side of my face but still enough for people to stare and ask "What's that?" This is where my Lupus started to show its real colors and my life would be completely changed. I later become Pregnant with my Fiancé Jason. We had a beautiful baby girl whom we had almost lost as she needed to be resuscitated at birth. As soon as she came too! I them went unconscious and they almost lost me too. I had hemorrhaged. We both almost died. The first couple of months were testing! I was still flaring up from giving birth and also not sleeping as I had Lexi waking every 3 hours for a feed. I was tired, exhausted and a little stressed! I was back in hospital within the first 4 months for a "Pulse." But even then, it still didn't seem to bring my Flare down. I saw my Rheumatologist Mandy and she suggested that we try one last resort. Cyclophosphamide. CHEMO! I was a little skeptical at first as you think CHEMO OH MY GOD, but actually it made sense. Nothing else had worked and there was really nothing left for me to try. Chemo was the next thing to try and shut down my immune system as nothing else had done this.
After having my first dose of Chemo, I was really Sick. I would vomit and just felt Icky. I was tired and drained and this continued on for 8 months. After 8 months, They decided to stop the chemo. IT DIDN’T WORK. I couldn’t believe it, I had just put my body through all that torture and torment and POISON for it not to work L My specialist apologized to me and said that there was nothing left to do but wait and hope for a new trial drug to start and that hopefully I would qualify to get onto it.
I am currently flared to the worst I have ever been and I cannot go into hospital to get treatment as I will not qualify for this trial. The TULIP TRIAL. I am in the screening process at the moment and am awaiting for my first dose.
I want to hold off from getting a pulse as then I don’t qualify for the trial. I am in pain however, I want this last opportunity to give one more thing a go before I throw in this towel.
Hairetiquette usually sponsors mick Ivakovic on his Melbourne marathon runs , so this year it will all happen once again but this year, we want to do it on Katie's behalf, mick will run the marathon as if he's Katie the more donations we get the more we dress him up to look like her he's willing to go as far as the donations keep flowing .
Let's all get behind that line and run or walk and support each other just as Katie does for everyone else . Let's give her something back!
Details are below , anybody can enter and join us . register early and we hope to see you all at the starting line .
All donations collected will be handed to Katie via Cheque @ Hairetiquette on 21/10/17any more info required please feel free to contact mick Ivakovic or Hairetiquette on Facebook
http://melbournemarathon.com.au/events/10km-run/
Katie's story
Katie Bukovac, I am 29years young! I was diagnosed with SLE (Lupus) the day before my 21st birthday.
Walking into the doctors, I sat down and started thinking of all the horrible things it could be. Not knowing much about Lupus, (Other than the research I had been doing over the last 2 days) I was praying it was nothing major. The Dr proceeded to tell me that the levels of my blood tests all indicate Lupus and the systems were the same. It was at this time that I was diagnosed with SLE (Systemic Lupus Erythematosus) or better known as Lupus and my whole world was about to change.
I was referred to The Royal Melbourne Hospital to see a specialist. They started treating me on low dosage steroids called Prednisolone. I was given 5mg and sent on my merry way! They told me to go back to my local doctor if any symptoms came back and that they would see me in a year to see the progress. I thought "Wow this isn't so bad after all!" Little did I know, a month later, I would be sitting in an emergency bed. Going out with my friends started to become a challenge. I was no longer able to go in the sun, so sunbathing and going to the beach was out of the question. Even going for walks or just really doing anything outside was a no go zone I remember being really tired and physically exhausted. Not the usual feeling but to the point where I couldn't get out of bed. I had a stabbing pain in my leg just below my knee. (Imagine growing pains that you had as a kid but 1000 times more intense.) I called for my mum and started to cry as the pain was unbearable. My mum took me straight to the emergency department at The Northern Hospital where they did tests and could not find anything. The doctor thought it may have been a blood clot but the tests didn't show any. I was given some morphine and monitored overnight. Nothing was ever found. The doctors upped the dosage of the steroids and sent me home the next day. Over the next couple of years, I started to become sick very easily. A common cold would turn out to be the full blown flu. A chest infection would be Bronchitis, a sore throat ended up being tonsillitis. This is because the medication I was on, is an immunosuppressant. Which means they are drugs to stop my immune system as that is what was attacking me. So naturally, I became a lot sicker easily. This was many hospital visits and stays and a lot of antibiotics. In 2011 I noticed that my Lupus started to attack my skin. It started on my right cheek and looked like a tiny red spider web! I went straight in to see Mandy and she admitted me straight into hospital for 3 days. I was administered, what the doctors and medical staff call a "Pulse" which is a high dose of steroids (Prednisolone) through a drip. 500mg every day for 3 days. would be laying there in constant sweats and my heart rate was through the roof! This, however took away the rash on my face instantly. "Thank God" I said to myself. But almost 3 days after being at home out of hospital, the steroids really started to kick in. I couldn't get out of bed. My muscles were swollen and tender and my joints were stiff. I sat up in bed, which took me 5 minutes to get into a seated position, and turned my leg to hop out of bed and WHAM... I tore my hamstring. This was the scariest thing I had ever dealt with as I felt paralyzed to move. I was scared to try and move in case I did some more damage. We called the registrar nurse and told her the case and she said it was part of having the "Pulse" and to take some Voltarin and to rest. For me the hardest thing was trying to explain this to my friends who were concerned but could not see any physical damage. I should have been a healthy 24year old out enjoying life, partying and being able to do normal things, but instead I was an ill, crippled, limping 24year old who had trouble getting a pair of shoes on or getting dressed or even going to the bathroom. I would get these swollen puffy balls on the bottom of my feet and wouldn't be able to walk properly. I would get tired really easy and just want to go to bed. I had 3 more hospital stays throughout that year as the rash kept coming back on my face and also started on my hands. The Doctors did a biopsy on my hand and it was found that I had Anti-phospholipid Syndrome caused by the Lupus. Which meant blood clots and also that I would most likely have miscarriages in the future. My heart was shattered as I always wanted babies and the thought of not being able to carry a child devastated me. My weight gain was a huge part of my lupus. The steroids just made me swell up to a huge balloon! I started to become really self-conscious. I would hide my face with make up to cover the rash. It was only a little red on one side of my face but still enough for people to stare and ask "What's that?" This is where my Lupus started to show its real colors and my life would be completely changed. I later become Pregnant with my Fiancé Jason. We had a beautiful baby girl whom we had almost lost as she needed to be resuscitated at birth. As soon as she came too! I them went unconscious and they almost lost me too. I had hemorrhaged. We both almost died. The first couple of months were testing! I was still flaring up from giving birth and also not sleeping as I had Lexi waking every 3 hours for a feed. I was tired, exhausted and a little stressed! I was back in hospital within the first 4 months for a "Pulse." But even then, it still didn't seem to bring my Flare down. I saw my Rheumatologist Mandy and she suggested that we try one last resort. Cyclophosphamide. CHEMO! I was a little skeptical at first as you think CHEMO OH MY GOD, but actually it made sense. Nothing else had worked and there was really nothing left for me to try. Chemo was the next thing to try and shut down my immune system as nothing else had done this.
After having my first dose of Chemo, I was really Sick. I would vomit and just felt Icky. I was tired and drained and this continued on for 8 months. After 8 months, They decided to stop the chemo. IT DIDN’T WORK. I couldn’t believe it, I had just put my body through all that torture and torment and POISON for it not to work L My specialist apologized to me and said that there was nothing left to do but wait and hope for a new trial drug to start and that hopefully I would qualify to get onto it.
I am currently flared to the worst I have ever been and I cannot go into hospital to get treatment as I will not qualify for this trial. The TULIP TRIAL. I am in the screening process at the moment and am awaiting for my first dose.
I want to hold off from getting a pulse as then I don’t qualify for the trial. I am in pain however, I want this last opportunity to give one more thing a go before I throw in this towel.
Organizer
Julieanna & Mick
Organizer
Cairnlea, VIC