Blog

Here you will find all my latest updates and news.... Enjoy :)

The future + a career

Recently I’ve been doing some soul searching. 

As I get better, more able, into my final years of high school, older, I have been trying to find who I am without my disability. 

I've always felt like ‘the disabled friend’ or ‘the hospital kid’, I’ve never truly felt that I knew who I was and what my values were as an individual. 

At the beginning of this year I started a TAFE course in Certificate 3 Community services and with that I need to do sixty hours of work placement each year of the course. 

I started to think about what interested me, where I want to go in my life and what I was curious to learn more about. 

I have always wished to be a nurse, ever since the young age of eight I've been writing about it in my diaries. I like to believe that I’m a naturally nurturing and caring person, it makes me feel good when I help people. 

Currently I want to go on to do my Bachelors of Nursing and Midwifery, I feel myself being drawn to this kind of work and I light up with interest whenever someone mentions birth and babies. This is what I want to do with my life. 

However I do have to place myself into the mindset of ‘the disabled girl’ and think about how I’m physically going to achieve my goals. 

Will I be able to walk around and stand on my feet for a length of time? 

What happens when I have my hips replaced, will I be able to go back to work and still have the same abilities?

Will I be able to handle to studies that come along with it and placements that happen? 

But, I know in my heart that what is meant to be will always find a way, so I trust that I will be able to do this. However the future looks for me, I’m finally exited about it and have aspirations + goals that I want to reach, and I’m going to try really damn hard to reach them. 

Update and some general thoughts

It’s been a while since I’ve updated on here and I’m pleased to say that its because everything has been going smoothly. 

I saw my pain doctor last week and he was over the moon to hear about my five month no- flare streak. 

I however, am feeling conflicted and a bit confused. I know that my health is improving and there are reminders of that everyday but i still am limited. I wrote something on my Instagram the other day in the midst of a anxiety attack which I believe explains my thoughts. 

 

"So close but so far from recovered.
Is it almost over? But, the pain will be lifelong, so it will never be over. I'm so confused. 
Do I now say I'm better? Will I ever be better?
I'm improving but my pain won't ever go away so is that considered better ?
I'm being promised a life of pain and hurting but I'm supposed to be happy about my hips and legs functioning how they are meant to and my nervous system calming down and not overreacting to basic stimulus.
I don't want pain. I'm happy to be improving but I want to be normal. I will never be normal. I will always be in pain. I will always be restricted by my condition. I want to be better, completely better, better to the point that I feel normal. I don't want any pain.
I just want to trade, I don't want this life right now.
I try to find reasoning out of this and I do find reasons but I wish I didn't have to live in this body.
I'm tired and I'm in pain, and it will always be that way, and that really sucks.”     

 

Of course, I’m going to continue in my recovery and hoping that one day I won’t have pain but I’m also trying to be realistic. 

I worry about going into senior years of high school, then trying to find work, then trying to have a family and be a mum, will that be possible? 

The future is so uncertain and it makes me worried, but I also know that my team, and myself, are working our hardest to make the future easier and more feasible. 

For now everything is good and I'm enjoying that, but I will remain cautious until enough evidence is in my brain to tell me I should feel otherwise. 

Late Night Thoughts pt.2

I'm struggling a lot tonight with flashbacks.
Not just visions but flashbacks.
I feel completely encompassed by this horrible feeling and I feel my body being thrown back into that moment as my brain brings it into my conscious thought.
I can smell the room, feel the air and how the energy moves, I can hear everything and see everything.
It's tough to bring myself out of this because as soon as one starts it is like a movie reel and other events are brought up.
To summarise: I feel defeated by the flashbacks tonight, I feel as if they won't stop until I sleep, I'm struggling not to cry, and this really sucks.
But, I will wake up tomorrow and hope it's a better day.

But you don't look sick.....

The #nowismyillnessinvisible#butyoudontlooksick challenge.
It's also #invisibleillnessawarenessweek
In the photo on the left you can see that I look like an average girl. That day I had done my makeup and hair, I even put on jewellery.
And in the photos on the right I'm passed out after my 5th surgery, you can see an x-ray of my hips and a photo of my scars all bandaged up and my IV drip beside my hospital bed.
I have been told all the of things I feel us chronically ill just wait to hear, "but you don't look bad" "but your so pretty" "you don't look like your in pain" "your too young for that!" The list goes on.
I'm now just waiting until the day that someone confronts me in the disabled parking space and tells me I have no right to be there because I 'don't look disabled'.
It's sad how from such a young age the people around us tell us we have to look a certain way to be disabled, that only people using aids have disabilities. Shouldn't we just look as someone and assume that they are doing the right thing? Why do we have to question it?
I understand, some people believe that they are doing the right thing by confronting people but you should only ever do that if someone doesn't have the correct disability sticker, in no other case is it acceptable.
Just because I'm a teenager doesn't mean I can't be disabled.
97% of disabilities are invisible.
So, not only for this week but any time you see or hear someone (even yourself) being told they can be disabled because ___.
Please stick up for them so that the person accusing them can be educated and won't do it to somebody else.
Nobody should ever have to justify their disability and if you don't feel comfortable explaining yours to someone who has already made assumptions, you shouldn't have to. Nobody has the automatic right to know about your life unless you choose to tell them.
❤️❤️❤️

The pain system for kids. Is it fair?

365 days since I was in my last appointment at the Royal Children's Hospital where they said they 'couldn't handle my case' anymore and that I needed to leave. 
After months of me fighting for correct treatment and the right to pain relief they told me they had nothing else to offer. 
In the 365 days since then I have found an amazing new clinic because of my surgeons contacts (and his willingness to do anything to get me into an adult facility), been able to correct my walking and improve my pain. 
I am one of the lucky ones. 
Children with chronic pain are not able to get correct treatment from the children's hospital because of a gap in the system. The pain team can not admit people into the hospital or give them treatment because of funding which means that people with chronic pain do not have access to relief or help. 
There is only one other hospital in Melbourne that takes on kids with chronic pain but they have even less funding. 
So, we have nowhere else to go because all adult facilities are off limits and the children's hospital has nothing else to offer. 
This is something that I am hoping to change soon and I have already started on the long road to changing the system and giving adolescents with chronic pain a fair chance.

Lauren Asam

When were you diagnosed? 

I was diagnosed with Hip Dysplasia as a baby and was put into a corrective harness, and after about 6 months they told me I was fine. I had pain again at 9 years old but the doctor told me it was a pulled muscle. I found a new doctor, and was rediagnosed at age 12.

 

What were the symptoms and events that made you go to the doctors/ hospital?

The reason I went to the doctor was because of a labrum tear that occurred in a soccer game (inner groin pain, limp, hip instability). It wasn't until later that I started to experience other symptoms.

 

What did the doctor do to diagnose you?

The doctor took an X-ray of both hips and an MRI of my left hip (where my pain was at the time) to diagnose me.

 

What did the doctor recommend?

The doctor recommended surgery, physical therapy and a cortisone injection.

 

What has been the biggest struggle?

The biggest struggle was when I was 9 and I finished physical therapy for my "pulled muscle", they told me I was faking the pain. It took a while to find someone who believed me.

 

What has been the best thing? 

The best part of having Hip Dysplasia is growing as a person. I learned to cope with pain, and as a result I became much stronger.

 

If you could change one thing about your whole experience, what would it be?

One thing I would have changed about the experience is getting the surgery earlier in life.

 

How did people react?

People around me didn't believe I was in pain.

 

Scariest moment?

The scariest moment was definetly waking up from the PAO surgery. I was in an immense amount of pain.

 

Do you use an aid?

I used crutches leading up to the surgery, and crutches and a wheelchair after the surgery.

 

What are your goals?

My biggest goal is to be able to run normally again so I can continue to play sports!

 

Has having DHD changed your outlook on the world?

Having Hip Dysplasia is definetly something to adapt to. In the beginning, I was negative and felt hopeless. Now that I have had corrective surgery I am way more positive and willing to advocate that it does get better!

 

What's one thing in the healthcare system that is a problem you would like to change?

One thing in my health care system I would change is the wait for surgery. I had to schedule my surgery six months ahead of time and it was very hard to wait when I was in that amount of pain.

 

What's one thing you would tell someone who has just found out they have DHD? 

One thing I would tell someone who was just diagnosed with Hip Dysplasia is that it does get better. With the right care, a pain free life is possible. Also, it may be hard, but advocate for yourself as much as possible. Nobody knows your body as well as you do!!

 

What's one thing you would tell an able-bodied person?  

One thing I would tell an able-bodied person is that pain can vary from day to day. Some days, you can be in so much pain that you can't walk, and the next you can feel virtually painless and go for a jog. One last note is to never discount somebody else's pain.

Hospital Admission: 10th- 16th of July 2016

After a really good five months I've been admitted to hospital because of a pain flare. I thought I would explain what's happening with me at the moment and address some thoughts that have been circling around in my head. 

First off, my nerve pain has gotten so much better over the past eight months and I, one hundred percent, credit that to my rehabilitation clinic. I'm constantly pushing my limits there but in ways that don't create terrible pain and that's exactly what my body has needed for so long. Of course, I have had bad days but they haven't turned into flares for the past five months and that still amazes me. Early last year I was in a bad condition and was starting to almost give up on the idea of recovery, I truly believed that maybe my body and mind just wouldn't ever recuperate fully. I was told that my body wasn't responding the way the doctors had expected it to and that they didn't really know what else to offer me, so we kept doing a program of intense exercise and strengthening work which would send me into a flare, only to do it all again the next week. Since changing clinics and doctors I have experienced a new way of managing pain. If something didn't work, we would change it, this sounds like the logical solution but in the past it just didn't really happen so I was exited to see what the outcome was. I have been told over and over by doctors that they think I could have a 'normal life' if we find the right treatment. As a patient I don't believe something until I see it now, I have learnt to keep my expectations low, so when I saw this new type of treatment working I was ecstatic. Since then I have made great gains. My walking has improved dramatically, my pain is much lower, barely any dizzy spells or other symptoms that used to bother me on a daily basis. 

Recently I have been increasing the amount of walking I do (I'm up to around 50 meters of good walking) and my school attendance is slowly increasing. My medications seem to be doing the job and with new techniques to use, I am coping very well.

On Friday the first of July my knees started to ache and when walking up the stairs I noticed my back, hips and shoulders were also becoming increasingly achey. Later that night my muscles became sore and started to cramp up. I could feel that my body was inflamed. This went on for a few days and on Sunday night the nerve pain, tremors, headache, cramps, aches and pains that I had became scary and agonising. My whole body was continually twitching, shaking and cramping and the pain was horrible. I managed to walk out to my parents bedroom even though I was extremely dizzy and my tremors were hard to control as I walked. I got to sleep in the early hours of the morning but only because of pure exhaustion. My anxiety had skyrocketed as well which made me very tired. When I woke up on Monday morning Mum reminded me that we had planned to go away to the beach as my Aunt and Uncle had recently bought a new house down there. Remembering how horrible I felt the night before, going on a holiday was the last thing I wanted to do. However I went anyway because I wasn't allowed to stay home and I did believe that some relax time would help. The following week was good and my body slowly gained more and more strength back and my pain decreased each day. I would use my crutch to help me walk and a lot of my time was spent sitting down or lying, which is exactly what I needed in order to rest. 

We arrived home on Wednesday the sixth of July and I went to rehab on Thursday as usual, I told them about the flare and everyone agreed and told me that I should have gone to hospital on the previous Sunday or even a couple of days before that when I first noticed the symptoms. I knew that they would say that but I felt so guilty asking to be taken to the hospital the day before a holiday. In retrospect, I should have pushed and done what was right for my body, I shouldn't have suffered like I did, but I learnt from that and will know for next time. My physiotherapy and psychology sessions went well that day and I went home feeling really good and in minimal pain. 

On Saturday I took my puppy to the dog park, watched her run around and it was great. I was feeling a slight amount of pain but nothing bad. That night my pain and other symptoms got bad again and I told dad that we needed to call my pain doctor and that I needed to go to the hospital in the morning. Sunday the tenth my doctor returned our call and told me to come in. When I got to the hospital we filled out the paperwork and I was put on my regular dose of Ketamine. 

For the first twenty-four hours I was dizzy and my head felt fuzzy. After that day I felt much more awake and alert. The Ketamine has different effects on each patient but normally I stay fuzzy for a good three days. Last time I was in the hospital on Ketamine, I had a panic attack, so being able to think clearly and be less anxious is great. My doctors are telling me over and over that I need to come in much earlier into the flares. My pain doctor especially wants me to wait a maximum of forty-eight hours. However, knowing the difference between just a bad pain day and when its a flare up is still quite hard for me to figure out. All of the doctors are telling me that I need to learn how to tell the difference but it's so difficult and the lines are blurry. It feels as if I'm completely responsible for making the pain worse by not going to the hospital earlier but I see that it will take time for me to be able to tell the difference. In my mind I don't want to be overdramatic about a little bit of pain however there is a very fine line between just a bad day and a bad day that turns into a flare. My doctor has told me not to feel like I'm being overdramatic though because we know that if my pain persists for two days or more it is a flare and there is nothing that I can do to stop a flare up other than medical intervention. My nervous system will feed off the pain and create more if I don't go to the hospital. We have been discussing triggers of the flare ups and even trying to educate my parents on how to see the symptoms before I can even feel them. If I get extremely moody, angry, anxious, etc, it could be a sign of a flare up.

But how do we separate what are flare symptoms and whats part of being a teenage girl? 

Within one day on the Ketamine my pain had reduced exceptionally and all of my tremors and other symptoms were gone. Since then the past few days have consisted of nurses, needles, doctors, lots of bed rest, Greys Anatomy and a lot of music to calm me down after doctors come and talk about my plan for the next few months. It's extremely overwhelming to think about going into year ten next year at school, trying to apply for special consideration and to sort out which classes I will be able to cope with. This was meant to all be over by the time I was starting high school and now its looking more like my goal will be for this to be managed by the time I get to University. Frustrating and saddening to say the least but I have to deal with it and take any little bit of progress I get. Last year I was told that if I didn't start improving and seeing progression with my pain and walking that we would look at hip replacements, so to be able to delay that for a bit longer is great. 

On Saturday, the sixteenth of July, I will get to go home. We are reducing the Ketamine by 1ml every 12 hours and then I will be taken off of it. For this flare we have used a subcutaneous line. The line goes under the skin in my belly and is pretty much just under the surface. The Ketamine is then absorbed through the tissue. It takes longer than an IV line to bring down the pain because it's going into the tissue rather than directly into the vein, however by using a sub-cut line in the long term it helps to preserve my veins. It does hurt a little bit once the fluid builds up because I get and rash and feel quite uncomfortable but its nothing too bad. For now, me and Mum are putting together a timeline for my doctors to try and figure out if there are any patterns or triggers for my flares. I'm exited to go home and even though I missed the first week of school I'm glad that we came into the hospital because the pain would have just continued and would likely have gotten much worse. 

Thank you for reading this very long update, 

Mikayla xx 

Jessica Porter

Here it is, my third interview. Jessica's story is different to my previous ones because she was born with Hip Dysplasia rather than developing it later in life. I think that many families may relate to this story and I believe that her message is important to share! 

When were you diagnosed? 

I was diagnosed when I was around one year old, my mother was the first and only one to notice it as I started to learn how to walk. 

What were the symptoms and events that made you go to the doctors/ hospital?

When I was born I was breech but the doctors had to turn me which some people say can lead to Hip Dysplasia. As I started to walk my mother realised that I was limping. She noticed that when I’d sit with my legs up, my legs went in two different directions. My right leg sitting normally and my foot straight up. My left leg was resting unusually to the left and my foot was pointed to the left instead of straight up. However because I was walking regardless and didn’t seem to be in pain, no one believed my mother. 

 

What did the doctor do to diagnose you?

My doctor decided to do x-rays of my hip and also general examinations. He would have me lie down and he’d bend my leg up, and sideways testing the joints. I would scream in pain when he moved it side to side and of course he knew along with the results of my x-rays. 

 

What did the doctor recommend?

He did an Osteotomy and put my hip back into place. Afterwards I was put in a body cast for about 3 months, then I was put into leg braces until I was 4 years old. I had to have a check up in his office annually to do general exams where he’d check the flexibility of my legs and see if I had pain left. Every year I’d go back for arthrograms, they’d use anaesthesia to make me sleep during the x-rays, but that was only when I was younger. During my preteen years it got harder because they no longer did arthrograms they did MRI’s. Getting the iodine injections for those were extremely uncomfortable for me. When I was younger my doctor told me that once I turned 16 he said I wouldn’t need any more check ups annually or MRI’S. I still go occasionally but not annually like I used to. 

 

What has been the biggest struggle?

It has definitely been trying to make myself as comfortable as possible and trying to speak up when I need accommodations. I don’t like people knowing I’m young and disabled so whenever I do need something I rarely speak up about it. I feel ashamed if I do. 

 

What has been the best thing?

The best part about having DHD is knowing how to take care of myself and knowing something about myself that not many people around me have. 

 

If you could change one thing about your whole experience, what would it be?

I would definitely change how my mother reacted to it. I was always afraid to tell her because she’d freak out and become upset, which led to me growing up used to my own pain and never telling anyone. As a child it was very difficult not to tell my own mother the pain I was in because all I wanted was help. Now, however I don’t have this problem. I freely tell my mother about how I feel which I think is because I’m older now and take care of myself for the most part and visit my doctor by myself.  

 

How did people react?

At first, no one believed it was true. Then after surgery my mother was the only one who was around me and paid close attention to me. My father and my older sister always did things without me while my mum would do things to keep me entertained at the house. Because I felt like too much of a burden, it was very lonely growing up in those stages of my life.

 

Scariest moment?

Trying to monitor myself as a young child. If I were on the playground at school and fell I would be extremely paranoid and worried that something might’ve happened to my hip again and I’d start crying asking the nurse to call my mum. 

 

Do you use an aid?

I don’t use an aid all the time but I keep a cane in my car for times when I’m in a great deal of pain. 

 

What are your goals?

I just want my hip to feel good when I go into my career and to know it won’t be holding me back. However I can do that, whether it would be medication or surgery or weight loss, thats all I want, is to never let it get in my way like it is now. Aside from the disability I want to finish college and become a radiologist (irony) and be overall happier with the cards I’ve been dealt in life. 

 

Has having DHD changed your outlook on the world?

I’ve never thought about this until now but yes it has. It’s made me way more aware about people with disabilities and made me realise all the ableist things I had to unlearn that I was taught at a young age. I used to judge when I’d see a young person coming out of a car in a handicapped spot, but now I am that person as well. It’s defiantly taught me to be compassionate and caring, just by seeing my mother take care of me my whole life. I look at things in an optimistic attitude now because if I can manage my pain and have been through all that I did, my other problems seem minuscule in comparison. 

 

What's one thing in the healthcare system that is a problem you would like to change?

It’s a problem to me that my doctor refused to prescribe me high pain medication because of my age, when really I’d only need them when my pain is too much for my regular medication. It’s like, what am I supposed to do? Waste my regular medication and be bed- ridden all day? Also the fact that they wouldn’t give me a permanent disability placard for my car. I’m not temporarily disabled so I don’t understand why my physician would only write me a temporary placard. The healthcare system seems to only cater to older patients with common diseases. The second that you’re young with disability you don’t get taken seriously. 

 

What's one thing you would tell someone who has just found out they have DHD? 

I would tell them to NOT BE AFRAID TO SPEAK UP and not be afraid for people to accommodate you. In the long run, you’re going to have to deal with this for the rest of your life, so it’s best to not hold back when you need something. Also, be patient with your body. For many years I hated my boy for putting me through so much pain and heartache but I am better for it, and your body should be taken care of and appreciated no matter how much you think it mistreats you. Trust me, it will be hard for many years and just when you feel like giving up, please remember that there are in fact other people like you, even though it doesn’t seem like it. The online community is such a great thing!! Look into it and make yourself know and reach out to other people who have Hip Dysplasia. But most of all, good luck and take care of yourself in any means necessary.

 

Whats one thing you would tell an able-bodied person?  

I always want to tell able-bodied people that they take their healthy bodies for granted. So please, take care of yourself and appreciate what you have been given. Not everyone, no matter what age, was dealt a healthy body. Be aware of us and our needs and be aware that there is a huge flaw in society about how we view disability. Educate yourself and hopefully through that you will be a little more compassionate to people with disabilities and learn to appreciate your body more.  

 

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Grace Leonardi

Here is the second interview I have done. Grace's story is like many other peoples so I thought it was important to share. She is such a strong and resilient girl and I admire her very much. 

So, heres her story... 

When were you diagnosed? 

 

Early December, 2015. I was 13 years old when I found out. 

 

What were the symptoms and events that made you go to the doctors/ hospital?

I first went to my primary doctor in September of 2015 when my right hip was popping out of place and it had been hurting for a long time before September. It started hurting in May of 2015, but I did not tell my mum until September. The doctor said to rest from sports and see if it helps, I do competitive cheer, gymnastics and also love to run. After that it was still very sore so I went back to my primary doctor and he referred me to a sports specialist for injuries. I went to him in early October and that doctor said to do physical therapy and no sport but the pain continued so I went back again to the sport injury doctor. He then referred me to a hip doctor/ orthopaedic surgeon. I went to him in early December. 

 

What did the doctor do to diagnose you?

They measured my MRI’s to see the angle of my femoral head in the hip socket and also referred to my x-rays. The hip doctor looked at them and diagnosed me. 

 

What did the doctor recommend?

After the physical therapy made the pain worse I got a steroid injection and that again did not help. Then I was scheduled for hip scope and then it got cancelled due to limited OR (operating room) time. We rescheduled it and shorty before that my doctor went to a hip conference in Switzerland, which had some of the best hip surgeons in the word, and brought my case up asking if the hip scope was a good idea or to go straight to a Periacetabular osteotomy. A PAO as its widely known. All of the doctors decided to do the PAO, which was then scheduled for March 8th. 

 

What has been the biggest struggle?

Not being able to participate in my normal things like sports and school stuff. Also I was on crutches from October 2015 to May 2016 so people did not believe I was hurt, would treat me poorly and say very rude things. 

 

What has been the best thing?

Finally getting the surgery and starting physical therapy I felt like I was actually becoming a normal human again and accomplished my small goals like walking with one crutch, etc. 

 

If you could change one thing about your whole experience, what would it be?

I would change the people around me because they did not act nicely. 

 

How did people react?

My friends did not understand what DHD is and the surgery I was having. People at school would call me a ‘faker’ a lot and it really got to me, even some teachers were rude about me missing school and would joke around about how dogs can have DHD. Even teachers would call me gimp and I had to go to the principal and tell him how they were treating me. My overall experience with people was not great and I wish people would have been more accepting of my situation. 

 

Scariest moment?

Right before surgery when they were giving me my epidural they faced me towards the wall where all the equipment was, drills, scissors, etc. It was very scary. 

 

Do you use an aid?

8 months before surgery I used crutches. After surgery I used a wheelchair, walker, then crutches. 

 

What are your goals?

My main goal would be to walk properly and do things more easily like lifting my leg. Another one of my goals would be being able to get back to normal things like cheer and gymnastics, also running if its ever possible. 

 

Has having DHD changed your outlook on the world?

Yes, it has taught me that you should never judge someone, because you are all fighting a battle and not everyone knows what you are going through. 

 

Whats one thing in the healthcare system that is a problem you would like to change?

Continuity of care. 

 

Whats one thing you would tell someone who has just found out they have DHD? 

Things will get better even if they feel like they are never going to, just keep your head up and never let someone tell you that you are not capable of something. 

 

Whats one thing you would tell an able-bodied person? 

Please never tell a person that a task is easy because that task could be one of there biggest goals. 

 

Instagram-  https://www.instagram.com/grace.leonardi/?hl=en

Kaylee Bauer

Since it’s coming to the end of Hip Dysplasia awareness month I wanted to introduce a new style of blog post that I will be doing. 

 

I’m going to be talking to different people and asking them the same 15 questions but the answers are very different. 

 

The first persons story I will be sharing is Kaylee. She is one of the first people I met on the internet and I find her story quite intriguing. She has not been officially diagnosed because she has something the doctors have never seen before. 

 

So, heres the interview I did with her and here are her answers. 

 

When were you diagnosed? 

Early January 2015 

 

What were the symptoms and events that made you go to the doctors/ hospital? 

 

I started getting sharp pains in my hips. Then in mid January I collapsed at school due to the pain. By this time I was always hurting, but I would get horrible sharp pain that went from my lower back, to my hip, down my leg. In February I went to two different doctors, then I went to a bone specialist that I had been to in the past when I broke the growth plate in my foot twice. 

 

What did the doctor do to diagnose you?

 

An x-ray then he sent me for an MRI arthrogram on both hips. Left hip came back fine but my labrum was torn in my right hip. Then I went to a children’s hip specialist and he did further x-rays and CT scans. Then I went to another hospital who had a team of hip specialists and two surgeons. They were in awe and said they had never seen this before, but agreed to take the case. My labrum was severely torn, ball & socket was rubbing bone on bone and my pelvis was tilted down, causing spine problems. 

 

What did the doctor recommend?

He had already started me on anti-inflamitory medicine and I had already been to four weeks of physiotherapy. They offered a spinal fusion to fix my spine problem but that would leave me paralysed, so I opted to just live with that pain. I had surgery on the 18th of August 2015 where they fixed my labrum tear, shaved 1/4 of my bone off from my ball & socket, cut my femoral head in half, to reset my hip and put two screws in. I was in the hospital for four days and on bed rest for two months. Had to relearn everything and I started physiotherapy in October 2015. The second surgery was in January 2016 to remove the hardware. 

 

What has been the biggest struggle?

Not being able to be the 18 year old I am, like I can’t keep a full-time job due to hip pain and complications. 

 

What has been the best thing? 

It has definitely made me stronger and made the bond with my family so much stronger as a whole. 

 

If you could change one thing about your whole experience, what would it be?

When I was deathly sick and needed the NJ feeding tube. But if I didn’t have to change anything, I wouldn’t because its made me who I am today and I’m a lot stronger. 

 

How did people react?

Not like I had hoped. My friends dropped me because I was what they called ‘crippled’ and ‘no fun’ to be around because I was bed ridden. My family and I got extremely closer throughout this journey though. 

 

Scariest moment?

When I fell in September. I was taken to hospital and they admitted me for pain control. I then told them I hadn’t been able to eat or drink in two weeks, they weighed me and I had lost 12 pounds. They put an NJ feeding tube in and that literally saved my life, I was knocking on deaths door. 

 

Do you use an aid?

I do not have an aid that I use daily but I do have my crutches and wheelchair that my doctor said to use if I have a bad pain flare. 

 

What are your goals?

One of my biggest goals is to be able to have a full time job and of course run, hike, dance and all of that fun stuff. 

 

Has this experience changed your outlook on the world?

Yes it has and my mood has changed. Just because someone doesn’t look sick, disabled or in pain it doesn’t mean that they aren’t. I’m also so grateful for everything. 

 

Whats one thing in the healthcare system that is a problem you would like to change?

I wish doctors would listen to you the first time you tell them that something is really wrong with your body. We know our bodies better than anyone else. 

 

Whats one thing you would tell someone who has just found out they have something similar to you?

Don’t give up. Yes, it’s hard, very hard and we get aggravated at our bodies and always ask why, but that it will get better. Just have faith and stay strong. 

 

Whats one thing you would tell an able-bodied person?  

Don’t take being able to walk and run for granted. Please don’t. 

 

Kaylee fell in April and was admitted again to the hospital for pain control and is currently doing another six weeks of physiotherapy. 

 

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