Tag Archives: #realityofunseenillnesses

?! Appendicitis August Part 4 ?!

Oh hey again,

We have almost reached the conclusion of this crazy month August. In my last post I discussed my journey from short stay and my hard fight that led to the small win of finally being admitted onto a ward. The CDU2 (surgical ward).

I awoke on what must of been the fourth or fifth day of being in hospital roughly st 8am, when I was delivered breakfast, I ate it and then was given my morning meds and introduced to the morning staff. A nice nurse came and did the usual obs routine, blood pressure, temp, heart rate etc. Everything seemed normal, she walked out of the room for a moment and then came back in holding a tiny little medicine cup with two round white pills. It was my first lot of medication, the nurse watched to make sure I swallowed it and then walked away. It was a little past 10AM now and mum had arrived back to visit me in the ward. The next few hours felt like so long, like being in a drugged up hospital daze of nurses and doctors walking in and out and eating hospital provided meals and trying to watch tv and every time I was just about to fall asleep someone else would come in and wake me up with something different, just like clockwork.

The elderly lady next to me had been discharged, I couldn’t believe how old she was, she was 91 and still fighting fit walking to bathroom and doing everything for herself, she was only in there for a small fall and couldn’t wait to get back home to her cat. I had the room to myself for most of the day, I thought I might of had an alone room for one nigh, I was wrong, late afternoon another lady was wheeled up from the ED department she was a bigger woman, she had a drip connected to her and every five minutes she  would howl in pain, so there went any chance of me getting any sleep.

Mum had been with me all day so I sent her home because I didn’t believe anyone was going to see me on this day. However not long after mum left two doctors, a male and a female gynecologist came to see me, I had gotten up to go to the toilet when they arrived so I listened to what they had to say from the chair the hospital provides for guests and patients. Some major discussion between doctors and the different medical teams must have happened because when these doctors came to see me they told me the best news that I had been fighting for the whole time, they said;

“We are going to do a diagnostic laparoscopy procedure to rule out any gynecological problems and insert a Mirena IUD for contraception and to help with the pelvic abdominal pain.”  

(a surgical procedure in which a fibre-optic instrument is inserted through the abdominal wall to view the organs in the abdomen or permit small-scale surgery.)

(Mirena is a type of long-acting, reversible birth control called a hormonal intrauterine device (IUD) and is manufactured by Bayer Pharmaceuticals. An IUD is a small, flexible, T-shaped device that is implanted in the uterus.)

They explained to me that my surgery will be tomorrow, but they weren’t too sure when and if it would even go ahead or if it would be moved back because I was just on the emergency cancellation board and said thank you, hoped back into my bed and then they both left. The girl then came back in a few minutes later with surgery consent forms and then explained them to me and what this medical procedure would entail. She left. I then rang mum straight away and she said that was good news and then to message her tomorrow before I went into surgery. That night I had a drip inserted to keep my fluids up, as I was no longer allowed to eat anything. I was exhausted so I was given pain meds and went to sleep.

The next day, the day of the operation all happened super fast, I was woken up at 5am for all the nurses to do the usual Obs, Bp, heart rate, temp and give me morning meds. I could feel and hear my tummy grumbling from not eating, and no my body kept pushing out my drip so the male nurse on morning staff took it out. At 7am I was given a surgical gown to put on, I remember having this queezy feeling in my stomach and someone arrived at my bed, a surgical nurse and said “Someone will be up to get you in the next few minutes”.

I smiled and said “Ok” even though I was freaking out, I then rang mum straight away, She hadn’t even gotten up yet and I told her I was about to go down any minute now, I was a bit irrational because I kept asking what if I went down and she wasn’t there, she just replied and said I’ll be there when you wake up. I literally got off the phone to mum and within seconds a ward person had come to take me down to the operating theatres, I remember thinking gee that was fast, wasn’t even 10 minutes. I was parked on my bed in a waiting bay where the nurse who seemed to be organising all the theatres and what surgeons were in which one could see me. Opposite me was a little girl in a bed getting ready for her surgery. The nurse at the desk could tell that I was having a bit of anxiety and nerves, she said that’s completely normal, she offered me to go to the bathroom and then put a warm blanket on me. I laid there for about 20 minutes and then asked if I could use the bathroom again, she said yes, I went and very little came out, I told the nurse and she said that’s normal its nervous wee, because your anxious about the surgery. I literally hopped back into a bed when a surgical nurse came round and got me, she introduced herself and then wheeled me to the operating waiting prep room. There I met the junior anesthetist and the head anesthetist, I had told them how my drip had come out and how they  had to put a new one in even though my veins are really fine and deep. Just writing and talking about it now I can still feel the pain from that moment. He smiled and said I will try my best. Whilst they were trying to jab me in the right spot to be able to put me to sleep, a surgical nurse had come in to see if I understood the procedure that I was about to undergo to which I said yes. It was funny and lucky because it just so happened to be that the strong female surgeon who believed me happened to just come out from that operating theatre and walked into mine she said to me “While we are there, we will just take out your appendicitis as well, so that you or no one else can ever blame your appendicitis again.”

I just nodded okay and the anesthetist had finally gotten the drip in, I was prepped and ready, they then wheeled me into a giant metal silver operating room with a black operating chair table, it literally looked and made me feel like I was in Grey’s Anatomy or Private Practice, or House or something like that. They pushed my hospital bed right up next to the operating table and told me to scootch my touche until I was laying on the black operating table. Once I was stablised a bunch of doctors and nurses swarmed around me, the put a blood pressure and heart rate monitor on me. A cold thing that sticks to your leg, made sure I was wearing beautiful surgical stockings, a nurse was holding my hand because she could see that I was getting a bit worried. The anesthetist then said he was going to start giving me a little bit of stuff, it was funny because I knew I was going to have to have a catheter in and all I was worried about was that I didn’t have surgical undies on. They said it shouldn’t matter and then someone brought over a giant blue tube thing that either had oxygen in it or sleeping stuff because I was talking to a nurse and within seconds I was out.

The next thing I remember is having a nurse calling my name to wake up, and suddenly my eyes slowly opened and I was in recovery, my blood pressure was really high and the pain was still pretty bad so they kept pumping me with stuff until it went down, I was almost on the full amount of whatever drug they had given me, when I was down to a pain level of two they wheeled me back up to the ward where mum was waiting for me. I do not remember much of the rest of the day except for the fact that I had apparently been really chatty. Pretty much everyone in my family had come to see me, once I had talked myself out I kept going in and out of sleep.

(Before Surgery)                                   (after surgery)

I had a few more difficulties with people before discharge but that’s another story, I was discharged two days after my procedure on the Sunday which meant I had spent a whole week in hospital fighting with doctors. I was sent home with pain meds and was told I would get a follow up phone call a month later.

Fast Forward to the start of September an unknown number appears on my screen, I answer the phone it’s a surgical doctor doing the follow up phone call, he starts by asking how I am doing and then proceeds to explain the procedures that were done. I almost laughed when I heard his final sentence. His final words to me were;

“We were lucky we took out your appendix when we did, as it was really inflamed.”

I said thank you and hung up. I then punched the air like a fist bump as I was right the whole time, I knew something was wrong with my body and I was glad that no matter how exhausted I was I never gave up the fight. I was and still am very thankful to all the people who offered to put me through private medical, to the kick ass girl surgeon who believed what I said was real, to the private gynecologist who made a lot of phone calls to the public system. This is me saying thank you I couldn’t have done it without you.

and to all you people out there who suffer from an invisible or unseen illness please remember to always believe in yourself, fight for your rights, remember you are not alone and together we can educate the world.

Lauren x

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Not always a Happy Ending

Welcome back fellow readers, bloggers to the world of The Reality of Unseen Illnesses,

Sorry I haven’t written for a few months I have been confined to white tiled rooms we call hospitals, going through the same cycle and struggle of fighting with Medical Health Professionals.

Let’s back it up a bit my last story was the long journey I had taken to discover I had an Illness called Abdominal Cutaneous Nerve Entrapment Disorder (Here is a quick re cap on what that disease is :  (ACNES) is a condition that causes chronic pain of the abdominal wall. It occurs when terminal branches of the lower thoracicintercostal nerves (7-12) are ‘entrapped’ in abdominal muscles, causing a severe localized neuropathic pain that is usually experienced at ventral portions of the abdomen. It is frequently overlooked and unrecognized, although the incidence is estimated to be 1:2000 patients.[1] )

It was an amazing woman, a woman who looked beyond the norm and discovered that this was the main source of my chronic pain, a wonderful woman named Dr Heide Feberwee
Gold Coast Persistent Pain Management Service
Suite 3, Campus Alpha
2 Investigator Drive
ROBINA QLD 4226
Phone: (07) 5668 6825
Fax: (07) 5680 9539

and after having the  (RFA) ablation surgery I was pain free for quite awhile. However because I am only a young 22 year old my nerves grow back quite frequently and I usually have this operation done every 3-6 months.

So lets fast forward a few months to June 2016, I woke up the same as every morning and went through my usual routine and whist normal 22 year old’s morning’s usually consist of breakfast and coffee, this is what my morning consists of 100g of Thyroxine for my under active thyroid (Hypothyroidism) , 1 tablet of inner health plus (because of all the antibiotics I have to take), Movical and Iberogast (to help soften the bowel and help the digestive system whilst on many Opiate related medications. Which is not good. BTW. PLEASE ONLY TAKE MEDICATION AS PRESCRIBED BY GP OR HEALTH PROFESSIONALS.)

So in June 2016 , I woke up and realised I had a very bad pain on my right side and at first it felt like that odd sensation before you need to urinate, when this appeared the pain became so unbearable that I remained in a crouched over position clutching my right pelvic side. So I went through the painful steps of organising a GP appointment, the GP sending me off to get a Pelvic Ultra Sound both Internal and External, and for a girl a first time Internal Pelvic Ultra sound is a bit uncomfortable. Transvaginal ultrasound is an examination of the female pelvis and urogenital tract (kidneys and bladder). It helps to see if there is any abnormality in your uterus (womb), cervix (the neck of the womb), endometrium (lining of the womb), fallopian tubes, ovaries, bladder and the pelvic cavity. It differs from an abdominal ultrasound as it looks at the pelvic organs from inside the vagina.

I had that done, got the results and was sent away with the normal anti inflammatory pain killers, but this didn’t do anything so hoped into mums car and drove to my second home ‘Robina Public Hospital.’  went through the usual cycle of explaining the same thing over and over again being pumped with pain killers, getting told there is nothing really wrong, organise another  round of ultrasounds and because of the pain killers the hospital pumps me with I end up having to have a catheter (“uretic catheter”:) draining urine from the urinary bladder as in urinary catheterization, e.g., the intermittent catheters or Foley catheter or even when the urethra is damaged as in suprapubic catheterisation. 

After a major 48 hours I finally ended up with a questionable diagnosis of Pelvic Inflamatory disease: (inflammation of the female genital tract, accompanied by fever and lower abdominal pain.) I was put on two types of antibiotics Flagyl

(Flagyl (metronidazole) is an antibiotic. It fights bacteria in your body.

Flagyl is used to treat bacterial infections of the vagina, stomach, skin, joints, and respiratory tract. This medication will not treat a vaginal yeast infection.)

and …

Doxycycline is an antibiotic that is used in the treatment of a number of types of infections caused by bacteria and protozoa. 

and whilst these medications for the two weeks in combination with strong pain killers did help this pain for a period of time. However because the side effects were so bad I almost considered just living through the unbearable pain. Some of these side effects from both antibiotics included:

  • Diarrhea
  • Nausea
  • Migraines
  •  Bleeding
  • Loss of appetite
  • and the constant feeling of not feeling 100%

 

So i guess where I am going with this story is that not everyone is happy ending, and I still have to fight to prove my illnesses are real only to end up with a MAYBE or Questionable diagnosis. The only good thing to come out of my stories is that I end up making wonderful friends at the hospital going through similar things to me so they are very understanding, so when you are feeling stressed, sick and alone please remember that you are not alone and that there are people out there just like you!

Lauren x

If you have a story about your invisible illness that you would like to share with me and the world please email : thatsteelmedia@gmail.com

 

A story not from me, but by another.

Today for the first day my blog has achieved and started to do what I hoped it would do, give courage and freedom to people like me, who have also been treated and thrown in the “too hard” or “it’s in your head” baskets to not feel afraid, and are not alone  in telling their stories. The more we do this, the more we are united I believe that we can make a bigger difference in the world on educating health professionals and the general public about unseen/ invisible illnesses.

This wonderful person reached out to me and had the courage to share with me their story, however in terms of this blog and their privacy, they have chosen to remain anonymous and out of respect I shall do that. I am just glad that they were able to share their story none the less.

This is their story:

“I just wanted to let you know I both cried and cheered reading your story! I feel so so sorry for what you had to go through. Makes me angry. My story is very long over a decade, and  now I’m telling you because I’m amazed that someone else has been made to feel how I did and still do as my pain journey has not finished unfortunately. I had a simple labrum tear in my hip.”

A hip labral tear involves the ring of cartilage, called the labrum, that follows the outside rim of the socket of your hip joint. The labrum acts like a rubber seal or gasket to help hold the ball at the top of your thighbone securely within your hip socket.

hip_labral_tear_intro01

 

” I was mis- diagnosed for 18 months with everything from post natal depression to depression and attention seeking thrown at me. I’ve since had hip replacement after years and years of battling again for help then back surgery because of a chiropractor that bulged 2 of my disks,  another surgery for that, and after waiting nearly a year for a DR to listen.

I was  called anorexic by people because I couldn’t eat from medication side effects and the constant amount of pain.. And now post 1 week after having my nerve block done my muscle cramping and headaches have not subsided due to poor posture and loss of muscle from not recovering from hip and back was damaged 12 weeks after that huge surgery.

Osteo has worked on me just this Thursday and was amazed at how lop sided my body is due to muscle miss alignment. I have a weekend right arm as I type with nerve pain running from shoulder to wrist . My recovery is going to take forever because I was not taken seriously in forever 😞 I’m 43 and I live in the body of a 90 yr old drives me crazy!”

Anyway that was long winded , thank you for sharing your journey it makes me feel less mental and a lot stronger about telling the medical profession . That I know my bloody body and to help me. Best wishes for you I hope your pain has gone for good you deserve a break xx ”

And I too thank this amazing person for having the strength and courage to open up to me and now the rest of you and share their incredible story which they are still writing, but please everyone remember you are not alone! There are others out there like you! We no longer need to hide, or feel embarrassed. Time to fight, stand up and believe in ourselves, we know our pain, our bodies, our stories and no matter what anyone tells you, you know best! Together if we are united we can help raise awareness about the Reality of Unseen/ Invisible Illnesses.

Thanks,

Lauren x

P.S. If you have a story you would like to share please send it to: thatsteelmedia@gmail.com

The Process to my invisible illness and final diagnosis: ACNE Part 3

Hi all, welcome back to the reality of unseen illnesses blog, sorry it has taken me a while to write the third part of this story, I was currently bed ridden and detained in a hospital bed for a week with no laptop or energy to be able to write about it, but that’s a whole other story in itself which I will write about shortly after this one.

In part two of The Process to my invisible illness and final diagnosis: ACNE, I had just discussed and shared some of my experiences whilst being at Monash for a few months, having numerous neurological tests done, only to find minor nerve damage in my leg but never able to find the cause. Which led doctors to the conclusion that it might be a psychiatric illness, something called Somatoform disorder, which is : A group of psychological disorders in which a patient experiences physical symptoms that are inconsistent with or cannot be fully explained by any underlying general medical or neurologic condition. Or in layman’s terms it means : That I was perhaps not dealing with an underlying psychological issue, such as depression etc, which then caused a physical reaction in my body such as PAIN!

This meant that these health professionals were ready to just transfer me off to the Mental Health team to a program called ‘Stepping Stones’, which was basically a Mental Health Institution for Teenagers and Young Adults. (I know I am re capping on some of my previous post but it is just to help the flow of the blog.) I remember being pushed in a wheelchair having a tour of the ‘Stepping Stones’ ward, clothes packed and I even manage to have my own room, but something just felt off to me, it felt weird, I just knew that in my heart I wasn’t suppose to be there. In that very moment, that is when something started to change, a fire started to burn within me, I knew I had to start doing something to help myself, I had to start believing in myself again and thinking positively. So I opted for out patient psychology, which was better for me anyways as the Psychology offices were located in Frankston, which was literally down the road from where I was living at the time which was In Karingal, in Victoria. It was an amazing experience within my body, it was like as soon as I started to believe in my self, despite still having the pain, I was suddenly able to walk by myself again, dress myself, go back to school and continue to do year 11 and 12.

After a few years of doing okay, my mum and my sisters decided to move to Sunny Queensland as all of my mums side of the family was already living up there. I decided to stay in Melbourne and finish my VCE (Or OP as the Queensland folk call it), because I had missed most of Year 11, I chose to do Year 12 over two years and that was the best decision I ever made. I was living in Melbourne with Kat’s mum, whilst Kat was living at her dads house so we still saw each other pretty much every weekend. I think living away from my family even though I missed them gave me a sense of growth and responsibility, I was now fully looking after myself and had a new sense of life.

However things started to go a bit pear shape again when I turned 18 as the Mental Health outpatient psychologist that I had been seeing were only for Young Adults and I had to see and try and pay for an adult one myself living by myself I had like minimal to no money to pay for these things and of course their was some relationship issues at that point in time. After a few years of constant health professionals telling you its in your head you, a part of you starts to believe it. So now I was anti depressants that didn’t really do much other than make me gain weight and made me sorta sleepy, which just made me feel more depressed. So once year 12 for the second time was over , I decided to move up to Queensland and be closer to my family knowing that Kat was going to move up within the next few years two.

Once settled into Queensland life I started noticing and experiencing symptoms in my abdomen, I was either constipated, or had bleeding or  other weird bowel movements and was experiencing excruciating pain in my abdomen. So I went through the series of my normal steps, find a good GP in Queensland that my mum recommended, he ordered some normal tests, such as bloods, urine, stools and then when I was still having problems he ordered a bit more things like ultra sounds, CT’s. When they came back normal, he referred me to specialists and surgeons who then said it may have been irritable bowel syndrome, so I changed my diet, when that still didn’t change anything, they sent me to see a surgeon again and her team, then referred me to a pain specialist.

So after a few months of having multiple health professionals look me over and go to the usual you are in the “too hard basket” it “must be in your head” , I was referred to a wonderful pain specialist who goes by the name DR. Heidi Feberwee , who was someone that was able to look beyond the obvious type of answers. I still remember my first meeting with her, I was running late, so I literally only had 10 minutes with her in her office as she was extremely busy. I remember sitting down with her discussing my symptoms, where about’s my pain was in my abdomen, she told me to lay on my back, pressed on a few places in my abdomen, said where I felt the most pain, she told me to get back in a chair, looked me in the eye and she said “I think you may have something called ACNE” and I was so confused , started touching my face, looking for pimples, I was like ” What are you talking about I don’t have ACNE?” She laughed and said ” No, I think you have something called Abdominal/ Anterior Cutaneous Nerve Entrapment disorder, which is when : Anterior cutaneous nerve entrapment syndrome (ACNES) is a condition that causes chronic pain of the abdominal wall. It occurs when terminal branches of the lower thoracicintercostal nerves (7-12) are ‘entrapped’ in abdominal muscles, causing a severe localized neuropathic pain that is usually experienced at ventral portions of the abdomen. It is frequently overlooked and unrecognized, although the incidence is estimated to be 1:2000 patients.[1]     

She then told me to research it , So I did, she explained that the only treatment was a nerve injection ablation, which basically means burning of the nerves. She booked me in for that treatment, I remember going in for my first treatment/ operation and freaking out because it was the first major thing I had ever had done. During the first half of the procedure you lay awake, the anesthetist gives you a local and Heidi puts a numbing cream over you abdomen and then inserts a giant needle into your abdomen, using an ultrasound machine she moves the needle around till she pin points the nerve, they test the area with a type of an electricity thing and once I can feel it quite a lot on a minimal setting, the anesthetists up my dose and put me to sleep, they then continue with the ablation of nerves and send me to recovery.

It was amazing after the injections, I went home a bit bruised, but once the bruising went away I was FINE! It was like a miracle, suddenly all the pain went away from my abdomen, it also went away from my hands and legs, I started living a healthy life again, losing weight, didn’t rely on pain meds and for the first time i believed in myself again. It wasn’t in my head, it never was, we just were looking in the wrong spot.

I guess the moral of my story and so many of my stories is you know yourself, you know your body. TRUST YOURSELF !!!

Lauren x

The Process to my invisible illness and final diagnosis : ACNE Part 2

Welcome back to the reality of unseen illnesses blog, thanks for reading. In my previous post I started discussing the journey of my invisible illness and how we came to the conclusion that I needed to go to hospital to get some clear answers. This is part two of that story.

Some parts I remember quite vividly and some parts are still very hazy but I shall try and do my best to explain everything to you. It was the day after Katrina’s 17th birthday, I was only 16 at the time and had been staying with my grandparents, they had a friend who was a doctor in neurology who suggested I come in for some tests at Monash Hospital, Clayton, Victoria. I remember being admitted in to emergency quite easily only because my grandfather entered emergency at the same time as me because he had hurt his back. They had already given him so many pain killers that he came round to check up on me and kept asking for my jello which was fine cause I didn’t want it anyway, yet still till this day he claims he never remembers this conversation, he must have been on some pretty powerful stuff.

I wasn’t in ED for very long, I saw a few doctors who saw how much pain I was in they gave me all kinds of medications, even severely strong medications and yet the pain wasn’t any better. They could see that I wasn’t able to walk, shower, eat, dress etc by myself so they soon decided to admit me and transfer me to the children’s ward. I remember travelling in a wheel chair to the lift, going up the lift and entering the children’s ward. The walls were painted yellow and purple , you could see the nurses station as you entered the floor and the starlight room was opposite. They wheeled me down a hallway past all the girls with the eating disorders and into a nice quiet room, with a computer opposite in the hallway that the kids used to study whilst in hospital. I got settled in for a few days, nurses and doctors kept coming in and out trying to do numerous amounts of tests. I don’t remember much as I was on a lot of medicine, which soon switched to IV medicine, it got so bad that morphine didn’t even help me, that they had to put me on a drip that was one thing lower than cannabis, they said to be careful because I could have hallucinated on that drug. I don’t remember seeing anything, but I do remember hallucinating a really bad smell. I only stayed in that room for about a week and then the nurses/doctors decided to transfer me to the other side of the hallway to a room with 3 ten year old’s. Now I had never been a very assertive person before then, I was always quite shy, hiding behind people, was polite and let people some what walk over me and a big part of my illness which I have now grown out of is that I disliked change. So when the nurses/ doctors decided to move me, I finally stood up for myself, not that it did me any good cause I still ended up in that room with the ten year old’s and in retrospect looking back now I probably behaved just as bad as a ten year old.

Once I was finally settled into this new room, I remember bits and pieces of different tests, I remember going up through the chain of doctors till I reached the head of Pain at Monash and the head of Neurology and within no time I had pretty much seen every doctor in that hospital and the whole hospital was taking about me. Some of the test that I had done were so painful, the main ones that still till this day stay stuck in my brain are the most brutal ones. The first one I remember quite clearly was when I got wheeled down to a tiny room where you lay on a bed and they first connect you up to some electrode stuff, then without anesthetic the doctor placed a needle or a rod into my leg and moved it around as if it were a gamer’s joy stick just to find if there was nerve damage. If it wasn’t there before I was certain there would be some after that procedure. I remember coming back from that procedure and I was crying and silent, I would not talk because it was one of the most painful things I had to endure. The second most painful procedure/ test that I remember having done was a Lumbar Puncture which is : The procedure of taking fluid from the spine in the lower back through a hollow needle, usually done for diagnostic purposes.

lumbar puncture

This was one of those unfortunate, unlucky things to happen to me, they had me lay up on a surgical metal type table, just casually left the door open for anyone to come in and see, did not give me any anesthetic before this procedure either and then decided that not 1, not 2, but 3 Interns would attempt to do this painful procedure before getting a head consultant to do it and to make things worse I had singing clown doctors in my face. Now I know the clown doctors were only there to try and help distract me but to someone who is in heaps of pain crying and then sees singing clowns in their face is a bit creepy. To make matters worse after the Lumbar Puncture, I then had to go back to a room full of Ten year old’s with a severe migraine, I wasn’t allowed to move and Nickelodeon had a sponge bob marathon running. Still till this day I hate sponge bob, it was so unbearable that I got up out of my bed and went and laid in the parents room. When I was finally able to return to my room I slept , but when I wasn’t asleep I still had this major headache even on strong pain killers, so the head of Pain came to see me and he said the best thing for it is “Caffeine” apparently caffeine helps migraines. So mum went and brought me some V’s, However because I had been on a cocktail of medicines and now every time a nurse entered my room she told me to chug V, I ended up throwing up so much brown vomit everywhere and have never ever drunk a V again.

I was at Monash for quite a few months, we even celebrated my sister Rachael’s birthday in the Hospital, my Friends from Drama had organised beautiful fake flowers with cute notes on them and my best friends Katrina, Rach and Sharna had organised a very special T-Shirt with drawings and lovely messages from all my friends in and out of school. I still have that shirt till this day and when ever I’m feeling down I just look at that shirt and remember there was a worse time and I will always be loved.

 

 

After a few months of mean physiotherapists, which then changed to a nicer one, harsh drugs, harsh tests and only minor results of finding minimal nerve damage in my legs, the team at Monash decided that I had now become a part of the “Too Hard Basket” ad I was sent to the “Stepping Stones” program, which was basically a mental health rehabilitation area for children and young adults. At this point in my life a major security blanket of mine was my mobile phone. It didn’t even have to be on or anything or even have a battery in it, I just wanted, but because of the no phone rule in the mental health department area they wouldn’t let me have it. I remember being wheeled through the halls, seeing the rooms, I was packed, I had clothes ready to stay and the hospital had even managed to give me a room by myself, but then a thought struck me, I AM NOT CRAZY!. I am not making this up and I do not believe I need to be in here. It was at that moment that I stopped feeling sorry for myself and decided I would get better by myself, so I Opted for out patient psychological help. This is when I truly changed, when I suddenly was able to be assertive and  stand up for myself, its funny you know because when speaking to out patient psychologists they actually said that if I had ever entered and stayed with the stepping stones program it wouldn’t have helped me, it would have actually made it worse.

 

In part 3 of The Process of My Invisible Illness to the final diagnosis: ACNE , I will discuss how I found the most amazing doctor who diagnosed me within less then 10 mins.

Thanks for reading, keep educating people on invisible illnesses.

Lauren x

The Process of my invisible illness; To the final diagnosis: ACNE Part 1

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.

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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: thatsteelmedia@gmail.com

 

Lauren x

About the Reality of Unseen Illnesses blog

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Hi, My name is Lauren Steel,

Some of you may know me and some of you may not. This is a picture of me, one of the better one’s anyways. When you look up at this picture what do you see? A girl smiling? clean, healthy skin? This girl in the picture looks 100% healthy right?

WRONG!

This girl, me, Lauren suffers from many invisible illnesses such as Hypothyroidism, Abdominal Cutaneous Nerve Entrapment Disorder (Acne) for short, and just recently a Pelvic inflammatory disease. All of these invisible illnesses cause crippling chronic pain, the chronic pain can be so bad sometimes that it is a struggle for me to get myself up out of bed every morning and having to spend all my disability pension money on medical tests or prescriptions. What kind of a life is that for anyone? Let alone a 22 year old? and no this blog will not be used for complaint but more so for information or educational purposes. I know there are many people worse off than me , living with Cancer, or in severe poverty and there is awareness about that. I wish to make a change in this world, a change for people like me, I will stand up and be an advocate for unseen/ invisible illness that are not just in Mental Health, but also in the chronic pain department or every other part of unseen illnesses that do not get the education they deserve. It’s time to stop doctors and other medical health professionals from telling us that “it is all in our head” because they do not have the education and awareness necessary and accessible to them and to stop stereotyping us and putting us in the “too hard” basket.

Lets make a change!

I have learnt a lot since being diagnosed with different things from the age of fourteen, throughout this blog i shall go through my different illnesses one at a time.

If you too have a story about the reality of your unseen illness that you would like to share please  email to : thatsteelmedia@gmail.com

and i shall share your story on this blog.

Thanks

Lauren x