Tag Archives: #pain

?! 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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?!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.

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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

 

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 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