Lupus & Me




What is Lupus?
 - Systemic lupus erythematosus (SLE) is an autoimmune disease, which means the body's immune system mistakenly attacks healthy tissue. This leads to long-term (chronic) inflammation. It affects  the skin, joints, kidneys, brain, and other organs.
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Oh how life has changed...


I remember the days of being a fun loving, out going 16 year old. With not a care in the world, I had all the greatest friends I could have asked for and I just couldn't complain. 6 years later and who am I now? A 22 year old depressed female who can not stand to look at the sight of her own reflection. Who would ever have thought I would have turned out the way I did. 


I blame lupus.


When I was 17 I was diagnosed with a chronic illness called lupus. I never know how to explain it to those who have never heard of it. I guess it's just an autoimmune disease which is attacking my body. 


At the beginning, my symptoms were mild. I had the blotchy swollen hands and the aching joints. I got told it was just ezcema but I knew there was more to it. I had never even heard of lupus before I got diagnosed.


To cut a long story short, everything was fine between the ages of 17-18. Despite the aching joints and owning a walking stick at the tender age of 18, I guess i could say the pain was bearable. That was until I started university in 2010. I was 19 and about to start a degree in something I've always loved; Magazine Journalism. 


I guess the stress of university took it's toll on me and unfortunately things took a turn for the worst. All of a sudden I had lost my appetite, everything I ate I would vomit up, I couldn't sleep at night because of this constant pain towards the top of my ribs. I absolutely felt like death. My friends took me to hospital. Luckily I was only there overnight whilst they gave me IV fluids.


Moving forward to December 17th 2010. The start of the Christmas break. The day I went back to London for 3 weeks. The 3 weeks I was meant to spend enjoying family time and Christmas food was spent in a hospital bed nil by mouth. I had tubes up my nose and down my throat, I had a catheter in and I just looked like a right old train wreck. I had found out I had pancreatitis, which left me looking 6 months pregnant with the biggest abdomen ever. I had to have a blood transfusion plus I found out I had a blood clot on my lung. Could my life really get any worse? Those 3 weeks were the worst moments of my life, I spent my Christmas AND New Years in a hospital bed constantly asking myself "why is this happening to me?" 


I guess Ill never know the answer to that question. 


February 2011 - another hospital stay but I was only admitted for a week. 


They say sickness brings on stress and stress brings on more sickness but I just couldn't help but stress. University was getting to me, my dad was dying from cancer and life just didn't seem worth living. My dad passed away on August 25th 2011 and ill never forget the painful moment of watching him take his last breath. My niece was also born on the exact same day which I see as a blessing. 


December 17th 2012 - yes I was admitted into hospital once again on the exact same day I was admitted 2 years ago. Strange huh? 

All my life I've been rather modest with my pain, I'd hide my suffering and just hope it would eventually disappear. This time it didn't. Something didn't feel right. I found myself in agony feeling like I was about to drop dead. My body was aching yet felt so numb. I was moving erratic. My mum rushed me to hospital that morning to find out I was having the worst lupus flare ever. I just couldn't believe this was happening again and I could not bare the thought of spending yet another Christmas in hospital. This time round I was lucky and managed to escape the hospital just 2 days before Christmas.
Time to fast forward.
August 25th 2013. The 2nd anniversary of my Dad's death. The 2nd birthday of my beautiful niece. The day i was admitted into hospital once again. How can one be so unlucky? 
This time round I was struggling to breath. I couldn't walk and couldn't move without being in agony. I was rushed to hospital in an ambulance to find out I have fluid around my heart. At first it gave me quite a scare but yet I was so content. That was until I was told I may have to have an operation,. A surgical procedure that consisted of a needle being inserted into my heart to drain the fluid which was affecting its function. Doctors were hesitant to go ahead with the procedure due to the risks. I spent 2 weeks in hospital having tests after tests, echocardiagrams, drips and treatment to control the fluid. I was given a high dose of steroid infusions which I was totally against (due to the horrible side effects) but I had no say in what was best for me.
I finally got discharged on September 6th 2013, spent 4 days at home feeling sick and agitated and then......guess what! The breathlessness and chest pains returned. This time it was worse. An excruciating pain which left me feeling like death was on my doorstep. I was rushed to hospital once again on the morning of Wednesday 11th September 2013. I spent another week in the Coronary Care Unit on a heart monitor whilst pumped up on steroids which has now left me looking like an elephant. I have currently gained 2 stone of water weight (fluid retention I really do hate you). The swelling is so bad I literally can not move myself. Once my kidneys are under control the swelling will reduce and leave me looking "normal again". I'm currently scared to leave my house because I look so deformed, I just can't hack the funny looks.
Never take your health for granted.

2 comments :

  1. Oh Leah. Do not ever worry. God is always with you :)

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  2. You are so strong and brave. Please do stay this way x

    ReplyDelete