Hip dysplasia – Big Decisions!

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As I’ve mentioned in previous posts I’ve struggled with pain and hip dysplasia since I was about 14/15 with little to no relief from painkillers, it wasn’t until early last year after a fall that I decided enough was enough. I went to my doctors who sent me for an x -ray as they were concerned that I’d do myself more of an injury due to the fall, thankfully I hadn’t done any further damage but they did find that my hip dysplasia had gotten worse as the bone had worn down more over the years.

After my initial x ray I was given an appointment to see a hip specialist which I was very nervous/apprehensive about, from this appointment I was then offered Cortisone steroid injections which you’ll know from previous posts worked absolute wonders for about 4/6 weeks. I was absolutely gutted that the injections hadn’t worked for a longer period and I was now back to square one but I was hopeful that at my next appointment they may be able to offer me something more long lasting.

Today 3rd February was the day of my follow up appointment and all that comes to mind is wow!! firstly I’ll start by explaining that just over 4 months ago when I last saw my specialist, I was told that surgery wouldn’t be an option they were even prepared to discuss for many years too come due to how much would be needed to rebuild my pelvis/hip. As much as I hate being in pain it was a relief to be told that surgery was such a long way off because as with many people I hate hospitals and even the thought of another surgery brings me out in major panic. So if I’m honest today’s appointment wasn’t something I’d been too worried over as I’d sort of convinced myself I’d just be offered some other forms of pain relief.

I couldn’t of been more wrong about the outcome of today, after waiting to be seen I was told by a nurse that my specialist wanted to know did I want a hip replacement, I was just like ‘wow what?’ It was such shock after not expecting surgery to suddenly be told that surgery was now my only option. If being told that having surgery was my only option wasn’t bad enough it then got worse when they proceeded to tell me that unlike most hip replacements due to my disability and the condition that my hip/pelvis is in that it’ll be a much more complex operation than usual, with a seemingly never ending list of possible complications.

Looking back now the whole appointment seems like a blur and I’ve got 101 worries running through my head and about a million more questions than I even got chance to ask during my short time with the specialist. They’ve given me an eight week period to think about it and then get my name on the waiting list but from what I’ve read in the booklets they gave me, I don’t think I’ll be getting the operation due to the high risks of certain things that could go wrong. I feel so frustrated and sad that after all these years it’s boiled down to either risk things being worse or spend my life learning to live with the pain.

Have any of you guys ever had a hip replacement or been offered one? If not how do you manage your pain? Any suggestions or advice would be amazing!

 

 

 

 

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Cortisone injections – Update.

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In December you’ll of seen I posted about my experience with hip dyslasia and how after years of hospital appointments and pain, I’d just recently had my first course of Cortisone injections on 18th November 2015. After the procedure I had quite a bit of pain/discomfort which the hospital had warned me about but within about a week the constant pain I’d grown so used to had completely gone. I honestly can’t put into words how good that felt, you’re body gets so used to feeling pain that you completely forget what it’s like to wake up pain free.

Three weeks seemed to fly by and I genuinely felt like I’d be given a brand new leg, I thought I’d finally found something that truly worked and as time passed I was overjoyed to finally be able to get back into a regular routine at the gym, I could see friends again I know it probably sounds crazy that it’d stopped me seeing friends but being in daily pain really had started to take it’s toll on every aspect of my life.

So everything was going great until about a week before Christmas when I first began to notice the clicking again when moving my hip, I didn’t think much of it and just assumed it was because of the increase in cold weather but with the more time that passed I noticed the niggling pain start to come back when walking. I was absolutely gutted at the thought of being back in pain as the last few weeks had been so nice and I finally felt like I had some control over my daily activities again.

We’re almost at the end of January and sadly my pain with my left hip has well and truly reared it’s ugly head again, it’s horrible to back to square one again after a lovely few pain free weeks but thankfully I will be seeing my specialist again in February and I’ve got everything crossed that he’ll be able to offer me something that’s more long lasting.

Have any of you guys ever tried Cortisone and did they work for you? If not how did you deal with the pain?

 

Hip dysplasisa & cortisone injections

 

If you guys have read the blog from the start then you probably will of read my post on hip dysplasia – to surgery or not to surgery, in this post I explained that I’d suffered from hip pain since I was about 15 and that when I was younger they had once offered me hip replacement surgery  but this was something I’d turned down at the time because as a scared 15 year old I felt this was a huge decision to make and I didn’t feel I knew enough about it. After I’d turned down the surgery they didn’t offer me anything else and I was left for years to just deal with it and try to manage my pain.

So I sort of give up on doctors but anyone who knows me will tell you that over the years I’ve googled hip dysplasia more times than I can count and tried every possible ‘at home’ remedy I could think of from heat packs, ice cubes, herbal remedies and even losing dramatic amounts of weight but nothing worked.

My pain just seemed to be getting worse the older I got and it was effecting my daily life more than ever as I was in constant pain, I decided earlier this year after a fall that enough was enough and I needed to get some help for my hip before it got any worse. So in June I went for my first appointment as an adult patient with a hip and knee surgeon, I’d waited almost 5 months for this appointment so I was actually really excited/nervous to see what help or options he would be able to offer me. I didn’t hold out much hope though as in the past I haven’t had very much luck in regards to doctors/specialists but to my surprise my specialist had said that surgery wasn’t something they would be willing do right now as it wouldn’t be just a hip replacement, they would have to rebuild my pelvis and then do a hip replacement apparently this is a really big operation which means the longer I can manage without it the better.

After many xrays/scans and examinations they found that as well as my hip dysplasia I now have secondary arthritis which they think is the main cause of my hip pain, although they didn’t think surgery was my best option right now they did come up with another option of giving me cortisone injections. Cortisone injections were something that I’d heard nothing about until ironically I met a lovely lady while sitting in the waiting room, it was one of them you know where you’re sitting there and a wonderful stranger starts telling you there story? I’d been sitting waiting to be called when this lady just randomly started telling me that she comes to the clinic every 6 – 12 months for Cortisone for arthritis in her hands. She told me she’d had them a few times and found them amazing so as you can imagine when they offered them to me I was over the moon, that was until I remembered how she’d described her clinic visits as ‘the scariest of my life’ she then went on to say that the needle was huge and some of the worst pain she’d ever felt.

Despite the stories of  terrible pain the lovely lady told me I decided the benefits seemed to outweigh the negatives so I decided to give the injections a go. On 18th November the day finally came for my first course of Cortisone and I can definitely say I’ve never felt more excited to go to an appointment even though I was really nervous as I’m really not too good with needles but thankfully my nerves were soon put to rest once the hospital staff ran through everything that would happen and assured me the needle wasn’t huge! As the doctors assured me the needle wasn’t huge and it wasn’t the worst pain I’ve ever felt like certain people had told me it would be obviously it was uncomfortable like you can imagine with any needle but it was over within 25 minutes, they told me that once home I’d probably be in pain for a couple of days as the steroid in the injections can cause slight irritation at first but after that I’d be fine to get back to normal.

Cortisone injections don’t work for everyone so for a couple of weeks after I was really apprehensive and nervous as to weather they would work for me but just over a month after my injections I’m so pleased to be able to say it has worked wonders for me and my pain has dramatically decreased, the effects of cortisone can last for up to 7 months so hopefully they’ll last that long for me and I’ll be pain free for many more months to come!

Have any of you guys had Cortisone? If so How did it work for you? please let me know in the comments below guys.

My views on ‘Don’t take my baby’!

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So yesterday 20th July BBC THREE aired a brand new drama programme called ‘Don’t take my baby’ which is about a young disabled couple Anna who is a a wheelchair user and Tom her partner who is partially sighted as they struggle too keep their new born baby as they try to prove to social services that despite there disabilities they can take care of there child’s every need, this drama was based on a real life situation and is part of 15 other programmes on BBC THREE as part of their defying the label season that will look at life as a young disabled person.

As many of you will know there have been quite a few programmes in the past about people with disabilities and disability throughout the last few years, that force society to rethink the way they view disabled people and I love that, the more people get to see that people with disabilities live the same lives as everybody else the better. This programme though more than any others I’ve seen really got to me and left me wondering about my future within today’s society as a young disabled woman. We live in a society that sadly at times judges everybody for everything but I’ve genuinely never even realised that one day I may be judged on my ability as a parent solely because of my disability. I know that to a lot of you that probably sounds incredibly naive but as my disability is one of the least important factors of who I am, I can honestly say I’ve never thought that one day my future as a mother will be judged by someone who doesn’t know me as a person but instead just knows me as a new parent with a disability.

I can completely understand that social services have a job to do and that any child’s safety should be the most important thing but watching that poor couple who obviously loved there child dearly being watched and questioned daily absolutely broke my heart, when there are people out there with no disability at all who don’t look after or mistreat their children. One of the biggest shocks for me watching last nights programme was that it is thought that approximately  3000 children are removed from disabled couples in the UK which is fair enough if every other possible avenue has been exhausted and the child is genuinely at risk but I believe that a lot more should be done to help disabled parents be the most amazing and loving parents they can be, I’m not a parent yet but I know that I will love my child/children just as much as any other parent and my disability will not alter that at all!

So all in all after spending hours crying and feeling angry I believe that BBC Three did an amazing job by raising awareness of such an important and sensitive subject in such an incredible way, the show was so well written both Ruth Madeley (Anna)  and Adam Long (Tom) the main roles are both very talented actors.

Did you guys watch ‘Don’t take my baby?’ If so what did you think? I’d love to hear you thoughts & if you didn’t I’d definitely recommend you give it a watch on BBC iplayer.

Loneliness & disability

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I stumbled across an article earlier this week that really shocked & saddened me, it was an article on BBC ouch that was titled ‘Why are a quarter of disabled people  are lonely’ this report was made up of survey results from disabled people 23% said that they feel lonely and isolated on a daily basis so why is this and why isn’t more being done to change it?

Reading articles like this one really get to me as it makes me realise that the way I felt growing up was perfectly normal sadly,  loneliness is one of the hardest feelings I think there is to deal with and while it is something that everybody deals with. I do think  a lot of research is put into helping older people who may struggle from loneliness due to no longer working or loosing friends due to age but not much seems to be put in place for young disabled people who can’t socialise, I do think it can be harder if you have some sort of disability or something that may make you feel different to your peers, as it may be harder for you to gain friends in the first place. I know for me it was struggling to do what other children found easy that made it harder for me to socialise comfortably because I always felt somewhat less than my peers. Even at the age of 25 I still struggle to socialise in certain situations due to poor access into certain places or just basically my awful shyness and I genuinely think that more needs to be done to help young disabled people to overcome these barriers and make lasting friendships.

This article highlights a number of reasons why people with disabilities find it really hard to make and maintain friendships e.g poor access, lack of money or low self esteem which are all perfectly understandable reasons to me as someone who has a disability myself but one of the most shocking facts this article brought to light was that a huge 67% of the British public admit to avoiding communicating with disabled people as they feel uncomfortable or just don’t know what to say which makes this another huge factor as too why people with disabilities struggle to make lasting friendships with their none disabled peers. I strongly believe that everybody should have at least one friend in life regardless of their abilities so more needs to be done to help people get out there and make connections, so my dream is to set up some sort of workshops to help people out with their social skills and hopefully give them a safe environment for them to make forever friendships.

So what are your guys thoughts on loneliness disabled or not, is it something you have struggled with or still do? If so what do you find helpful?

Happy National Cerebral Palsy Awareness Day!

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Today 25th March 2015 marks National Cerebral Palsy Awareness day, so I couldn’t let it pass by without writing a post so I thought I’d do a post about all things positive when it comes to Cerebral Palsy. I thought I’d write a list of 5 celebrities with Cerebral Palsy who inspire me because they have never let their disability hold them back when it comes to pursing their  dreams.

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Francesca Martinez –  Francesca Martinez is best known for being a stand up comedian & actress but she is also a campaigner. Francesca’s attitude towards disability and her Cerebral Palsy is refreshing and is something that inspires me and many others to never let CP get us down.

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Christy Brown – Christy Brown is someone I’ve only recently heard of but wow what an amazing example of not letting anything stand in your way, Christy was born with severe Cerebral Palsy and his parents were sadly to when he was born that he would have no sort of life as he only had control over just one limb which was his left foot. Despite doctors predictions Christy went on to have an amazing career in both art and poetry and sold his amazing paintings done with just his foot all over the world.

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Anne McDonald –  Anne McDonald was an author and an advocate for people with communication difficulties sadly Anne had a difficult start in life which saw her be neglected and starved at the hands of her carers. Despite her difficult start in life and her serve Cerebral Palsy Anne never let that hold her back, Anne’s book called ‘Annie’s coming out’ all about Annie’s life won numerous awards and went on to be made into an award winning film. As well as this Anne was also an amazing advocate who did so much to help raise awareness for people with Cerebral Palsy and communication difficulties.

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Abby Curran –  Abby is an american beauty pageant contestant who was the first person with a disability to compete in Miss USA, she now appears on American TV regularly and has now set up her own pageants for young girls with disabilities called ‘The Miss You Can Do It’ pageant.

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Dan Keplinger –  Dan is best known for his art and his Oscar award winning short film King Gimp, He is an incredibly talented artist and also a great example of how cerebral palsy doesn’t have to stop you living and pursuing your dreams. Dan is now a motivational speaker and talks all around the world inspiring people and motivating them to find and pursue their passions in life.

This list is just a small example of 5 incredible people who are proud of their Cerebral Palsy and have never let it hold them back or define them, I know so many incredible people who aren’t famous who motivate and inspire me everyday! Who inspires or motivates you guys?

Since starting this blog I’ve had so many amazing comments and emails of people saying they love my passion and positivity when it comes to my disability and it’s such a lovely feeling because only a few years ago I really struggled to accept and love my disability, so I wanted to use today to let anyone out there who might be struggling with accepting their CP know that it will happen eventually over time you will come too realise that your Cerebral Palsy is just a tiny part of who you are and you can achieve incredible things! One question I get asked a lot is ‘Would you take a cure for you Cerebral Palsy?’ & the answer always is  NO without a doubt, I’m not saying that my CP doesn’t annoy me at times but I consider myself to be blessed and I’m proud of who I am Cerebral Palsy and all! I think we should use everyday but especially days like National Cerebral Palsy Awareness Day to unite and show the world that we’re proud of our Cerebral Palsy and that it won’t stop us making our mark on the world!

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So I just want to finish this post by saying Happy National Cerebral Palsy Day too all my fellow CP’ers I hope you all have an amazing day and keep showing the world how incredible you are and let them know that having Cerebral Palsy is not a big issue, we will never let it dull our sparkle! ❤

The Do’s & Don’t’s Of Disability!

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As a lot of you will know I’m looking to set up my own disability awareness training business so over the last few months I’ve been attending some business training courses. Being on these courses has brought up a number of questions about what I do and don’t find acceptable when it comes to my disability, this has got me to thinking how awkward or uncomfortable certain people feel when it comes to disability because they don’t know how to act for the best. Every disability and every person with a disability is different so I’m not saying that my list of do’s and don’t’s will fit everybody but they are definitely important too me.

The Do’s!

  • Do ask questions – I know certain people don’t feel comfortable answering questions about their disability but for me I’d much rather some one ask about my disability than just sit there wondering.
  • Do speak directly to me – I’ve been out on numerous occasions either just in the street or at appointments and someone will look right at me but then speak directly to my parents like I’m not even in the room, I have a disability that doesn’t mean you can’t talk to me.
  • Do act normal –  I am a human being just like anyone else, I don’t need any kind of special treatment just treat me like you would any other person.
  • Do see any mobility aids as part of my personal space – Weather it be walking sticks or a wheelchair, it is part of the person so don’t lean all over it or move it without asking the person. I wouldn’t come a pick you up and carry you off so please don’t push my wheelchair without asking me.
  • Do think before you speak – I’ve always been told to think before I speak and this is a saying some people have never heard because I’ve been asked and heard so many ridiculous things when it comes to my disability and if people just took a second to think before they speak then this awkwardness wouldn’t happen.

The Don’t’s!

  • Don’t make assumptions – One of my biggest bugs is when someone knows one disabled person or one person with Cerebral Palsy so they just assume they know me and how I am.
  • Don’t patronize me – I’ve had so many people who see my disability then for some reason think they need to speak to me like I’m a child, I’m 25 years old my disability does not effect that.
  • Don’t help me without asking – This may sound a bit harsh as I know people will think they’re being kind by helping and I’m grateful that people want to help me but I can’t stand it when someone comes over and just takes over or starts doing something for me without asking do I need their help.
  • Don’t tap or touch me –  This one actually makes me laugh and I genuinely don’t understand it, would you go up to a stranger and tap their head? No so why is acceptable if the person is disabled? Let’s be honest it’s not it’s just disrespectful!
  • Don’t single me out of conversations – I remember being in college and being sat with a group of girls who decided to leave me out of a conversations about boyfriends because they assumed I didn’t have a boyfriend because I was disabled, which of course isn’t true! If I don’t won’t to be involved in a conversation I am more than capable of letting you know.

So I hope that this short list helps anyone out there who may be struggling when it comes to interacting with people with a disability and please remember the most important thing is that we’re just like anybody other person! Interacting with someone with a disability shouldn’t be a big deal!

Blogger help? :)

Hey all my lovely fellow bloggers this is just a quick post to ask for some help, some of you will know that I’ve been wanting to set up my own business for some time now and earlier this week I had a meeting with a business advisor.

The meeting went well and I feel like I’ve made a huge step forward in terms of setting up seemenotcp but now I need to do all the boring stuff like business plans and market research which is where I’d like your help, Seemenotcp would go into schools, colleges, universities, organisations and speak to new parents of children with Cerebral Palsy and help answer any questions, give talks, raise awareness and also offer disability awareness training. Before setting any of this up though I need to see if their is a costumer base and a need for my services so if you feel you or anyone you know would benefit from this type of service could you please take the time to fill out this short survey?

You can find the survey here https://www.surveymonkey.com/s/PZ6K82P  it will take less than 10 minutes to fill out but will really help me out, Thank you for your time and any help you can offer me guys! 🙂

Making huge steps forward in the fashion industry!

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From reading previous posts I’m guessing that you will know by now how important it is too me and how passionate I am about seeing more disabled people within the media e.g in films, music or the fashion industry, I believe that if disability was displayed more in the media then there would be less discrimination which in turn means people would become a lot more accepting and open minded.

As the years go on things really are improving but they’re no where near perfect so you can imagine my happiness earlier this week when I stumbled across a news article about the beautiful and talented Jamie Brewer, for those who don’t know Jamie is a British actress/model who is best known for her role in American Horror  Story as well as this Jamie is also an activist, writer and artist but Jamie proved once again this week that having a disability should never stop you from following your dreams by being the first women with down syndrome to rock the catwalk at Fashion week in New York.

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Jamie along with other disabled models showed the world that disability isn’t a barrier and became part of  history by being part of  designer Carrie Hammers ‘Role models not runway models show’ this show was about a lot more than looks and just fashion though, it had a brilliant concept behind it of showcasing beautiful, inspiring, strong and passionate models who had a range of different abilities. So this show was an absolute perfect fit for Jamie who just goes to show everyone out there that no matter what disability you’ve got you’re fabulous and can achieve so many great things.

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Something you guys may not know about me is that my dream is be a model and it has been since I can remember. Sadly I’ve never really had the confidence or belief in myself to take it any further than just a dream, so too see other women out there like Jamie Brewer or Chelsey Jay Reyonlds (Both beautiful disabled women) going out there strutting their stuff on a huge catwalk or posing beautifully in front of the camera, not only fills me with pride but also pushes and motivates me to see my beauty and never let my imperfections stop me.

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All these models shown above are stunning regardless of what disability they have  but when is the last time you saw any of them on a billboard or in your local high street shops? Sadly I’m guessing the answer is never! So although things are definitely moving in the right direction, more still needs to be done to help get disabled models out there into the mainstream media.

I’d love to hear what you guys think is there enough diversity in the fashion industry? Why do you think disabled models aren’t used within the media as widely as there able bodied peers?

Yay or nay to shows like the undatbles?

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I’m a sucker for a debate and this week I found a news article on line that I thought would be brilliant to get peoples opinions flowing. As a disabled person myself I absolutely love seeing programmes that help raise awareness of disabilities in a positive way, so when I found this article on the pros/cons of shows about disabled people e.g the undatables, don’t drop the baby or beauty and the beast, I knew I had to write a post about it.

As with any show there will always be some controversy so you’ll have your lovers and your haters. I’ve got a huge amount of friends who can’t stand these shows for the simple reason that they feel these shows not only belittle disabled people but they also don’t like the backlash of negative attention these shows bring for disabled people. I can completely understand their opinions but I love these programmes and have from day one but like every show on tv these shows have both there positives and negatives.  I love that they all show that having a disabilities doesn’t stop you living a ‘normal’ life, it has it’s ups and downs but you can live as happy and fulfilled life as anyone.

One thing I do hate, hate, hate about these shows is the incredibly small minded and insentive names the big bosses at the bbc/channel 4 insist on calling them, I mean what an earth would make them want to call a programme about disabled people dating ‘The undatables’ How is that allowed??  as a disabled women myself I’m definatly not undatable I’m a bloody good catch! 😉 and too me calling it ‘the undatables’ suggests to other people that they should in some way pity disabled people looking for love, another one was the show ‘beauty and the beast’ a few years back which saw two different people, one with a facial disfigurement and someone who was obsessed with looking good and you got to watch as the pair spent time in the others life. As much as I loved the concept this programme was trying to promote I stopped watching after a couple because I found that the name of the programme in some way made fun of people with facial disfigurements and made them sound less attractive than there ever so beautiful peers.

I have friends who a couple of years ago took part in a programme with a name that they were less than happy with as it was about them being disabled parents and they felt that the programmes name gave the opinion that as parents they weren’t very careful, which of course isn’t true. Disability or not they’re some of the best parents I’ve ever had the pleasure of meeting and there two boys are some of the happiest and most content kids you’ll ever know.

I understand that the big chefs have to get ratings and by giving these programmes risky names they’re drawing attention to the show so therefore it will get views which of course is great for them and to be fair to them I don’t actually believe that they set out to hurt or offend anyone with these titles but if they just put a little more sensitivity and thought into the names then I truly believe that these type of programmes would not only flourish year after year but they would also help in a great way to raise awareness of how diverse and amazing our world can be.

So now that you’ve heard my rants I’d love to know what you guys think?