?! Appendicitis August Part 3 ?!

Welcome back fellow bloggers, readers and anyone who suffers from any unseen or invisible illnesses, lets bring you back into the story of the blurred month of August. In my last post I had just described my journey from the clinical decisions unit (CDU) to the short stay unit, to eventually getting to a CDu2 surgical ward after three days of fighting with doctors and nurses.

So lets take it back a little, so I can give you some  more insight into what I endured over that week. It was 11pm when a ward person had come to collect me from (CDU) and transfer me into the Short Stay Ward which was still another part of emergency,once I was settled I sent mum home because it was late. I remember laying there for half an hour uneasy to sleep because I was running back and forth to the toilet whilst trying to wheel a drip with me and not dirty my cloths at the same time. Once I was finally able to stay in my bed for longer then five minutes, I remember calling the nurse for my night time meds because I take amitriptyline (Endep) for my nerve illness. (This medication is used to treat mental/mood problems such as depression. It may help improve mood and feelings of well-being, relieve anxiety and tension, help you sleep better, and increase your energy level. This medication belongs to a class of medications called tricyclic antidepressants. It works by affecting the balance of certain natural chemicals (neurotransmitters such as serotonin) in the brain. Or Nerve Pain. )

The nurse answered and said she would be right with me, when unfortunately her time was suddenly obtained by a woman next to me who seem to be suffering from a fainting spell or was unconscious, I wasn’t too sure what was going on I could only make out bits and pieces of the sounds coming from behind the curtain that came between me and this other patient. I felt sorry for her, I thought yes I am in extreme pain but I also felt sorry for this woman who had only now come back into consciousness and was told she wouldn’t be going home to see her family anymore only for her safety.

I was suddenly interrupted from this hospital daze when a doctor, the young woman gynecologist who was the first person to see me was standing at my door (hospital curtain) She looked at me and said “Frankly I’m surprised you’re still here”  I was still in a shocking amount of pain and she could see it, so I kind of just dismissed her comment because it was late and I was sick of arguing. She did the same external test she had done on me two days prior and same results, she then opted for an internal examination, which as a patient you have to give consent, I was willing to do anything at this point to find out what was wrong with me. She then went away, I had finally just been given my night time medication when another woman appeared, a doctor, a different one. She was a general surgeon she had introduced herself I can’t really remember her name but apparently she remembered me. She said that she had read my hospital files and had found an extensive report that she had written about me back before my nerve problem was diagnosed. She had such a strong female presence about her, she did the same as every other nurse and doctor that had been to see me, I started to sound like a broken record 10/10, yes, excruciating etc and then after a quick examination she said the best words that I have ever heard in my life.

She said “So all that psych stuff is bullshit right?”

It was the first time I had smiled throughout this whole journey and I said yes it is. She said right let me just make a few calls and have a conversation with my boss and I’ll get back to you. I said thank you as she left the room.

By now it was like 12:30/ 1 am, my hospital television was on in the background, I could feel my eyes start to close, I was in an out of a sleep daze, my eyes were closed but I could still hear the different beeps and weird noises that came from each hospital bed. Just before I hit full rem sleep at about 1:30 AM, I was woken up by the same young gynecologist woman who was wearing blue scrubs, a bald Indian man, clothed in black scrubs was standing with her. She introduced him as her boss, he then introduced himself as the head consultant gynecologist at the hospital. She stood behind him at the end of my bed as he listened to my story, I don’t know if she was having a crappy day or if she just didn’t like me but you could tell she didn’t really want to be there as she rolled her eyes as I continued to tell her boss the same story I had been telling.  He then asked me if he could do the same external examination that everyone else had done I said yes. He saw how much pain I was in, constantly crying out when people touched me and even when they didn’t, when they pushed down and when they let go.

He then stood at the foot of my hospital bed and said here is the plan;

“We are going to admit you up into the CDu2 Ward (Surgical Ward), We will keep you up there and try and manage your pain by giving you different strong medications more regularly instead of like here in ED where you only get it when you ask for it, and we hope that by managing your pain it will still get better. You will then be attended to by the doctors on the morning rounds does that sound good?”

I nodded my head yes, I was happy to finally be admitted to a ward, so even though it was such a small win, it was a win after fighting with doctors for three days straight. They left. I then went back to sleep for what literally felt like 2 minutes before a wardy came to collect me. They wheeled me up to a room and I was sharing with an elderly woman who was sound asleep because it was now 2am in the morning. The ward nurses came to see me did my usual obs told me how to use the tv/ computer to order food and to watch tv. They left and I sent mum a message to let her know where about’s in this giant hospital I was now located and I finally went to sleep for that night.

 

This was such a long journey/ month which is why there will be 4 parts, in part 4 I will tell you everything that happened to get to my positive outcome. Please I encourage you all, if you have a story of invisible or unseen illnesses I would love to be able to tell it, share it on this blog. You know your body the best and sometimes you need to fight, believe in yourself, back yourself and together we can educate health professionals and the world.

Lauren x

 

 

?!Appendicitis August Part 2 ?!

Hello fellow bloggers and readers welcome back to what was a whirl wind month of August 2k16. In my previous post I started telling the story of my unbearable abdominal pain, which involved a lovely trip to the Gold Coast University Hospital, where I was poked and prodded, dosed up on pain medication that didn’t seem to be helping the pain at all. So I was transferred to CDU (Clinical Decisions Unit) the place where you go to wait to see if you will be transferred to a proper ward for further investigations or sent back into short stay just to manage pain. (Kind of like the cycle of emergency or not)

 

(The following events transpired over the 16th and 17th of August, It was very fast and much of it is a blur.)

On the 16th of August very very early in the morning I was seen by two young female gynecologists, they asked me similar questions to what the ED doctor had asked? Where is the pain? How bad is it out of 10? Does it feel worse if I push on it? To which majority of my answers were YES and Excruciating and 20/ 10. They didn’t stay for long and just told me that they didn’t believe that it was gynecological related and because of the pelvic ultrasounds I had done whilst under the ED team and there were no clear results they left.

I was told I wasn’t allowed to eat all day in case I had to go and have more tests, I ended up having to go for another X-Ray and when the results came back they said they couldn’t see anything except that I was heavily constipated and my bowel gas was blocking visuals of anything else. So the only treatment plan I had in place was to manage pain and to give me movical and an enema to help loosen my bowels.

This day is all a bit of a blur with so many nurses and doctors walking in and out of my room and my pain still not dulling at all, I was exhausted because I hadn’t been able to sleep and to make it worse there was no TV in my room to help distract me, I was bored and I felt like I was going insane with pain.

I had already been fighting for my patient rights for one night and I remember one of  the nurses on change over , she had to do my regular obs,blood pressure, temp,heart rate and she asked me the same question “How is your pain level out of 10?”

and when I replied with 10 she said “no your not, you would be screaming and crying if you were”, just because I didn’t have any tears left in my eyes from crying the day before I was dehydrated. This comment didn’t sit well with me, because I thought how would she know? She is not experiencing my pain and everyone’s pain tolerance is different. I had been dealing with pain since I was 16 so I had to have some sort of coping mechanism to deal with the pain right? So I asked her as I burst into tears, so much so that I was no longer able to speak for myself and mum now had to step in and speak for me. She explained to the nurse that I was just fed up and incredibly frustrated because I have had to fight and face comments like that all my life. The nurse then became very sympathetic because she could see how upset I was and she had not wished to upset me. The nurse and mum then tried to explain to me it was the chart used to help the nurses to help me so what I thought was a 10 may have been an 8 so they could provide me with the proper dose of medication and that she did not mean it in a way that my pain was any less then I had been describing. I now understood she was just doing her job which I respected and felt sorry for her that I was being such a pain. I was now physically and emotionally exhausted so I tried to sleep.

I was in and out of sleep when suddenly I awoke with the horrible pain again, I sat up in my bed crying and clutching my stomach, it seemed like there was no one around now, mum had gone to the food court to get some dinner. I felt like I was in so much pain and the halls were empty when suddenly a doctor/ surgeon or someone pointed at me and said she may have a kidney stone as well so get her a test done. I waited and waited and nothing….

it was almost 7pm at night now when I was seen to by a gynecologist, he seemed above the level of the two girls I had seen earlier, he had a feel of my stomach and went through the same questions again. “How is your pain out of 10?” Does it feel worse if I push on it?” “Is it a sharp or dull pain?” “Where does it hurt the most?” I answered with all the same answers as before yes, it’s excruciating, the pain isn’t getting better. To which he then turned around to me and said ” Look I don’t think it is Gynecological related, all I can do is either discharge you from here because I do not see the need for further investigation or put you into short stay and let the morning doctors discharge you.”  This made me furious I had already been fighting for a few days, I yelled at him and said the surgeon before wanted to check my kidneys and no one did that, I am in agony, the pain meds haven’t been working, I haven’t eaten in three days, and my GP wrote me an emergency referral to come into  hospital because when I was at Robina they wanted me to get a laparoscopy done. To which this surgeon basically tuned around and told mum and I that because of the money, and the stupid public system they would not do the diagnostic surgery unless I was physically dying and because all my test results were clear they couldn’t do anything. I argued and said if bowel gas is in the way how do you know something isn’t wrong if you do not look?

He replied “I’m sorry, that’s just the way it is, I can help with the bowels but I can not promise that you will not be discharged tonight.”

I was sobbing now and hyperventilating, I couldn’t breath, I was so upset, I thought I’m not getting sent home just to come back again tomorrow to go through the same thing. Mum was furious she got on the phone to her private gynecologist told him the situation and he asked to speak to the public doctor and basically told them that they were idiots for not checking everything. The public doctor just said the same thing he said to us that there is only a certain amount of money allotted to the public system to perform operations. Now all he was saying was that he would transfer me back to short stay and under the care of the ED doctors again. I was overwhelmed by the generous amount of support from Facebook and people offering to pay for my private health if the public system refused to give me tests.

It was now  11 pm at night, I had been given some more movical and another enema and once that kicked in things started to flow like a fire hydrant, It would suck because I would be in bed, then I would feel this horrible flushed feeling on top of the pain and would have to rush around the corner to the toilet, this happened five or six times within the space of 10 minutes to the point where mum just said stay down there, I also now had another hydro lite/ saline drip to keep me from being dehydrated because I hadn’t eaten all day.

When I finally got back to my bed, I found that there was a wardy there waiting to transfer me to short stay in ED, I remember asking him if my bed was next to a toilet, luckily it was. Once I was transferred I was allowed to eat something, not that I really felt like eating because I had been so sick, I now had a TV in short stay and had finally been given my night time meds, I started to get settled in and it was really late so I sent mum home. There must have been a conversation between mums private gynecologist and someone up high at the public Gold Coast Hospital because within an hour of my getting transported to short stay the head consultant of the gynecology team was at my bed and had decided to speak with me. He did the same tests as everyone and then said they would be transferring me to CDu2 which is the surgical ward just to manage my pain on a more regular basis. It was 2am by the time I was transferred to the ward, so I fell asleep pretty much straight away.

In my next post i will continue this story and my journey and fight to not give up on my body and to always believe in myself.

Lauren x

 

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

 

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.

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.

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

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