Hello fellow bloggers and word press lovers it’s me Lauren and this is the story of the process I had to go through to finally get a diagnosis 7 years later.
In my previous post I discussed how I was diagnosed with Hypothyroidism, at the age of fourteen, just a quick re-cap:
“Hypothyroidism is a condition in which the body lacks sufficient thyroid hormone. Since the main purpose of thyroid hormone is to “run the body’s metabolism,” it is understandable that people with this condition will have symptoms associated with a slow metabolism. The estimates vary, but approximately 10 million Americans/Australians have this common medical condition. In fact, as many as 10% of women may have some degree of thyroid hormone deficiency. Hypothyroidism is more common than you would believe, and millions of people are currently hypothyroid and don’t know it.”
I was put on a hormone replacement called Thyroxine, Sometimes called Oroxine. I was fourteen at the time and have been living on hormone replacements since and I seemed like a fine, happy healthy young girl again. I wasn’t as tired anymore, I was back at school, I was a healthy weight and suddenly all was right with the world or so I thought.
AND THEN I TURNED 16:
I had recently just transferred from South Oakleigh Secondary College, where I got bullied severely and moved to a school called Karingal Park soon to be McClleland College where my best friend Katrina was attending, which made the transfer a lot easier because I already knew her and her friends.
I always loved musical theatre from year 7, I made a promise that I would always be in school productions so I also made a lot of friends when I joined the Karingal Park school productions. However half way through production I ended up needing crutches because I had always grown too fast for my body that my knee caps would constantly pop in and out of place. It was always annoying because it would happen randomly and it just so happened to have happened literally straight after another cast member and he used to make claims that “I was copying him” like I had control over my body, and my invisible illness. This is one statement that constantly upsets me because people can’t physically see what’s going on in my body so they claim I have control over it like it was my intention to have my knee caps pop out of place and cause me severe pain every time I walked. Luckily the knee cap situation cleared up pretty quickly.
When it drew closer to the end of year Ten and the start of year Eleven I started noticing some more changes in my body, apparently I was really skinny, so skinny in fact that I almost looked anorexic, however I had no clue of the fact, as I believed I was a healthy weight for my age and I loved to eat.
Lauren in Red (Left), Katrina best friend in Yellow (Right),
Although looking back at the images above you can tell that I wasn’t as healthy as I could have been. Then out of the blue I started experiencing severe stabbing pain within my fingers and toes, which then progressed to my hands and feet, at first I just thought these were growing pains as I was always growing too fast for my body. However within a week this invisible illness had progressed quite rapidly, the sharp stabbing pains that had been constantly occupying my hands and feet had suddenly progressed up through to my arms and to my legs and soon this sharp irritable unbearable pain had consumed my whole body. It got so bad to the point where I couldn’t walk properly anymore, I walked with my knees bent into one another, almost like I had polio disease. From not being able to walk properly my body was so ridiculously heavy, so mum made an executive decision to hire a wheel chair. When I wasn’t bed ridden or laying on the couch, I used that wheelchair to do everything and go everywhere, I even remember attending Katrina’s 17th birthday in my wheelchair.
It was the moment when my invisible illness started causing me more issues than not being able to walk, when I wasn’t able to bath myself, dress myself and even eat without needing the assistance of my mother or someone else, was when my family and I decided after many inconclusive doctor visits that it was time to go into hospital. I was staying at my grandparents house and they were close friends with a neurologist who worked at the Monash Hospital in Clayton, Victoria, So that was the hospital I was to attend.
In part two of this blog post, I shall discuss my admittance to hospital and the tests that I went through from what I can remember anyways and the next chapter to how I ended up with my official diagnosis of Abdominal Cutaneous Nerve Entrapment Disease (ACNE)
Stay Tuned and Keep reading and if anyone has a story that they would like me to share on this blog please email to: firstname.lastname@example.org