MY STORY....

I am writing this to tell you a bit about me and my life, maybe it will help some to understand my world through my eyes… I am putting my heart on my sleeve here so please be gentle... I have emotions just like you do.... I am telling you this to help you realize that I do truly understand as I have been there and still am....... *UPDATED VERSION** December 2011

 I think I would be safe in saying that all of us have been through some form of pain throughout our years…… Whether it be physical, psychological, disabilities of many different proportions, disappointment, grief, loneliness and the list could go on and on.. However, everything that has happened to me has made me a stronger person!

My life began on the 20th day of June 1967. Unknown to me, I was about to embark on a journey like no other. Born 11 weeks prematurely I was left in the hospital where I was born, here in Perth, Western Australia. My biological parents did not want me, yet neither were they willing to give me up for adoption. So I was quickly placed under the ‘care and protection’ of the Department of Family and Children’s Services. I was an orphan, placed in an orphanage and I was to be a ‘foster child’……
I think I would be safe in saying that all of us have been through some form of pain throughout our years…… Whether it be physical, psychological, disabilities of many different proportions, disappointment, grief, loneliness and the list could go on and on.. However, everything that has happened to me has made me a stronger person!


I was very lucky and blessed at 22 months old to be put into a foster- home with beautiful parents. They are my parents in my eyes! Some children I met weren’t so lucky. I will be eternally grateful that I was so well loved and taken as their own child. I was not an only child but as I got older it seemed like I was……


                     Part of my story begins with constant unexplained illnesses from birth. I spent a lot of time in and out of the hospital and nursed back to health by mum and dad. I have fought Lupus since birth, it is an autoimmune disease which has come very close to taking my life on numerous occasions. At the time it badly affected my respiratory system causing bronchial pneumonia. I did not find out until later that I had this disease and it would be expected to take my life by the age of 20, which was what I was told by the specialist who diagnosed the condition. I am thankful that that was not the case. So little was known about the illness, lots of questions but no answers…. All I knew was that I got sick very easily and a lot and had a lot of operations for problems over the years. I have had every part of my body, internally, which is not a vital organ removed for cancer and cysts….. I am grateful to have had such caring medical team to help me through…


For some reason, unknown to me, I have no memories of being younger than 10 years of age. I only know what I have been told by my family. I know that there has to be a reason for this but it has never really been important to me. Although there are times I wonder but I have so many beautiful years which I CAN remember!  They are the ones I hold close to me always… My mum and I travelled all over Australia together and enjoyed every minute of it. I helped my mum through nervous breakdowns and we got through it!! Unfortunately my mum passed away when I was 17 years of age, she was just 35. I know that there were better things meant for her!!



I have fought through sexual abuse from about 14 years of age. I felt I had no one to talk to, I had been threatened if I told I would be taken away from my family and I had no idea what to say anyway.. It was around this time which my mum was going through her nervous breakdowns and I couldn’t tell her about it because I though she might get sicker, so for right or for wrong I kept it to myself for many years.. That was my decision to make.
I went through more than my share of violent relationships, just as so many of us have. I have managed to come out the other side, maybe a little more ‘nervous’ than I would have otherwise have been but I got here!!!
 


                 I am 44 years of age and have had lupus since birth. I spent the best part of the first five years of my life in and out of hospital for respiratory problems including bronchial pneumonia. At the time lupus was not really known about and I was never tested for it.. I have suffered with mouth ulcers and coldsores all my life, they get so bad at times all I can do is drink through a straw and it still hurts my mouth.. With the lupus went my appetite so I have always had a battle with trying to gain weight. I have always been very underweight for my age and height when I was growing up. Even now I am underweight but that is due to the intolerance I have to foods, especially when I am in a flare. I drink subsitute drinks (hospital formula) to try not to lose too much weight. It is also due to multiple organ damage.


                My parents could never work out what was wrong with me as I always got very sick very easily. If there was a cold or flu going around I would get it and it would put me straight back in the hospital. It was then discovered by a blood specialist, who tested me for everything known to man, that I have lupus. There was not really a lot known about it when I was diagnosed with it. So it was just told to my parents that I would probably get sick quite a lot. I have had a lot of surgeries in my life and had everything that is not a vital organ removed. I am thankfully still in remission of cancer which I got at 25 years of age.


                I have had 3 miscarriages which my doctors put down to the lupus. I have since found out that they are a sign of lupus. I have three beautiful healthy boys whom I think the absolute world of and am thankful they are males, although lupus can affect males it is alot rarer. My daughter passed away at three months old from SIDS. I know there were better things meant for her.. RIP my Angel..




            I went through a period in my life where my lupus seemed to lie dormant for approximately ten years. It was not until I got Cancer that my lupus came out of remission also. The radiotherapy and chemotherapy did not help me, sure they put the cancer into remission but made my lupus worse, unfotunately. I have always found it hard to talk about myself  for the fear of people saying that I am feeling sorry for myself or want attention. Nothing could be further from the truth, as anyone who knows me knows all too well. I never want pity, just understanding, a a want to help other with these debilitating diseases..


                 Now my liver, pancreas, spleen, heart and brain are all affected to different degrees. My liver is constantly enlarged and I am on the urgent donor list, and have been for sometime now but dialysis and trasnfusions are helping me through most of the time.....and I have pancreatitis more often than not but I still try to stay as positive as I can.  That and pray a lot!!


                 I have just recently been told that I need a liver and pancreas transplant as having had lupus for so long, like any auto-immune disease, it wears down the organs over a period of time. I also need to have my right kidney removed and my spleen, however, that will not be done as I have too many organs affected by the lupus. I have only recently been told that I have been removed from the transplant list. I would be lying if I said this wasn't hard on me, emotionally and physically as the pain in my organs and muscles is always there..........  I am eternally grateful to my mum ( may she rest in peace) who passed away when she was only 35 years of age from undetected breast cancer, that she got me into the church and helped me through some extremely difficult and painful experiences, also with a lot of prayers.


                   I got fibro about 10 years or so ago, yes I ache all over at times and I hate the disease but for the most part I have learned to live with it, I am not making light of fibro because I know how very painful it is but to me the lupus is more painful. I don't know why I guess I am able to shut out the pain of the fibro better or something, I am not sure.. I also have rheumatoid arthritis and degenerative disc disease, spondylosis and polyarthryalgia, both affecting the spine. I have recently had a second spinal surgery and one a year ago. I have just recently had a third procedure done which has filed and I am now in more pain than I was before.. I have no option but to have surgery again in the New Year.. My spine is crumbling and the vertebrae are compressing the nerves, so I need further surgery to overcome this. A bone scan done approximately 12 months ago showed that I have the bones of an 80 year old woman. I am 44 yrs if age...


               I have now also been diagnosed with COPD (chronic obstructive pulmonary disease).. My respiratory system is not coping with things too well


                                                  Of course there is more to my story but this is what I wish to share with you for now.


                  I am a very positive person and look for the good in everything, and if I can't find it then I just look deeper. However, I am no stranger to the depression we go through and have my moments.......Thank you for reading this.  I find that the group I started has helpedme in so many different ways, it has also helped me to bring out things that would have otherwise have stayed 'locked-up' inside of me...... I love people and love being here on Facebook as it is the only real friends I have due to my illnesses.... Many people find it too hard to cope with illness which is why I started this group, so that people would have a 'safe place' to be able to speak of their feelings etc without fear of retribution, or being told they are complaining......I truly appreciate your friendship,. I hope I am able to help you too


With love, hugs and blessings Jayde