The ChronicPainBlogger

Hi, guess I’m starting this blog to be a voice for my self and the millions of others that deal with Chronic Pain day in and day out. I’m a 37 year old mother of 2 wonderful kids unfortunately at the roughly the Same time they came along nearly 12 years ago my pain began. First operation was when my son was 6 months old. I had a dermoid cyst that was attached to an ovary and a lot of other things in this area. Operation did not seem to be a massive success as they took one of my ovaries and cut into my bowel and nerves but did remove this tumor. Not long after this my pain in this area got worse and after scans they realized my uterus was put in the wrong spot and had to be reopened and fixed. Unsure if these procedures led to the more pain to come. I started to have pain running down my legs and severe lower back pain,always felt as if there was running water dripping down my legs a very bizarre feeling which I’m still plagued with but things were about to get a whole lot worse. I Then had my second child my little girl and soilded with my pain purely cause I had kids and what drive they give you. When my children got to the age of 2 and 4. I became violently ill coughing up blood with body ache that required me to crawl to bathroom to vomit. Knew I was in a lot of trouble I was coming in and out of consciousness and was on my own at my parents house (kids were out for the day for me to get rest) I decided to call an ambulance told them my symptoms and how I kept lapsing in and out of consciousness,yet they did not come I rang around for help as my parents were away eventually I got onto my sister. She picked me up and and we went straight to our local hospital. After a while of a wait I seen the doctor he examined me and said we were in the wrong hospital. I needed to be in ICU where there was a chance to save me so he tried to stabilize me and hoped in the ambulance beside me to get me to ICU in Footscray hospital. It was terrifying I knew my life was at stake and the very last thing I remember was grabbing a nurse by her collar saying
“I have 2 babies you have to save me and I would not let her go until she’d promised me that they would. Then silence, they put me in an induced coma and tried to figure out what they or should I say we were fighting. It was pneumococcal pneumonia both lungs to were filled pneumonia so they had to put a breathing tube in. My parents were in Vietnam but doctors had asked my sister to get them home ( western suburbs Vic Australia) They didn’t think I’d make It. I stayed in an induced coma for the next 13 days. They hadn’t decided I was going to live until around the 10th day. A very traumatic time for all family and friends. On the 13 day I awoke to indescribable pain I was tied to the bed unclothed with both hands tied to the side of the bed,covered in a white sheet Apparently i didn’t like the the breathing tube and every time they released my arms I’d try to rip it out. I could not talk and the only form of communication was done by me writing on a white board. I kept asking why everyone was red, I remember that till this day the walls were red family,friends doctors nurse’s they were all red it was bizarre. My Aunty told me after I spoke of this experience that red was the color of pain?? Don’t know but was certainly strange! I still did not leave ICU, was unable to leave there until I could breathe without the breathing tube. I desperately wanted that tube out they tried to take it out and decided I was not get sufficient oxygen so put it back in. They also made me use this machine that forced massive amounts of oxygen into my lungs at once and when I’d see that machine getting rolled over I’d almost have a panic attack. The pain it inflicted on my lungs and body was like nothing I ever experienced. Doctors could finally remove my breathing tube and I was moved to another ward, my body did not work the same everything ached I could not walk with out the aid of a walking frame. Life got extremely hard I wasn’t taking it day by day more like minute by minute. They sent in a immunologist as in the past I had been gravely ill when I was 2 and when I was16 with meningococcal meningitis guess they were thinking there was more to this,What my Mum had been trying to tell doctors since I was a young Child.
Sure enough Mum was right my immunologist called and asked are you sitting down Why?? I asked
“You have something called Factor b deficiency. “Yeah so what’s that”?
We believed without this path way you could not live but I guess I’m living proof of you can but you just get sick a lot. He followed on by then telling me you are the only person that has this” Yeah in Australia” I said
“No in the world” We know of another 2 people that are missing this pathway one in America the other in the Netherlands but they both have some immunity you have none. He seemed so excited. But I had lots of questions what this meant for the future my children’s future could they have this? As this is my first ever blog I’ll leave this here there’s plenty more of my life’s story to share. I just want share the rest of my journey to the present. Then get stuck into all the issues,frustrations solutions and helpful tips that I have learned along my Chronic Pain journey. If you know any one that struggles with this issue share this blog even if they take one thing from the many blogs I intend to right. Just wanna let you know if your in pain your not alone and if we share our experiences and our ways of coping we can all learn off each other. Thanks for taking the time to read my very first blog. God Bless!!

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