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?

 

Trying to change perceptions – My fixers project.

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Everybody who knows me will tell you how passionate and determined I am about changing people’s perceptions of disability, that is a huge part of the reason I started this blog, I’ve come across so many people who seem to have such a preconceived idea of what a person with a disability is like or how they live there lives. So with that being said  I’m always trying to think of new ways to challenge how people treat and act around someone with a disability,  in July 2015 I was just looking around online when I stumbled across the Fixers UK website. If you haven’t heard of Fixers they’re an organisation that helps young people age 16 – 25  campaign around an issue they’re passionate about using a number of different ways e.g short film, poster, campaign or an event/workshop. After looking through the website and seeing some of the campaigns other young people had made, I decided to give it a go and sent an email expressing my interest in becoming a Fixer. You can find out more about Fixers and also view my Fixers profile here.

I’ve contacted numerous charities/organisations and heard nothing back so I was pleasantly surprised when I received an email from Fixers saying they would like to arrange an initial meet up with one of their team to discuss my ideas. On August 7th 2015 I had my first initial meeting with a Fixers Co ordinator (Mariam) which was great, I spent about an hour speaking to Mariam about my life with a disability, the times I’ve faced discrimination  and why I wanted to make a change.  It was lovely to speak to someone who truly listened and really wanted to help me make positive changes, I remember going home after that meeting and feeling happier and more determined to make positive changes than ever! Me and Mariam  emailed back and forth about my ideas until my project was assigned to a producer who could help me develop my ideas into a resource.

On 2nd October 2015 the day had finally arrived for me to meet again with Mariam and also a Fixers producer (Abi) to discuss  all my ideas and get the ball rolling on producing a resource. The meeting was amazing yet again I’d never met Abi before so I spent time with her discussing my disability and why making a change was so important, we then chatted about what kind of resource I wanted to make. After reading through and discussing my blog we decided that making my blog post ‘The do’s and don’t of disability’ into a short film would be a great way of getting my point out there and hopefully help non disabled people end any awkwardness they might have around someone with a disability. Anybody who has ever met with me will tell you that I use humour quite a lot in my approach to my disability so I decided that using humour in my film was best suited to my personalty and everybody loves a bit of humour right? Abi wrote down all my ramblings/ideas to take away with her and put together into some sort of script for my film.

After about 2/3 weeks I received the script for the film from Abi and absolutely loved it! It was everything I’d wanted it pointed out some of the experience using humour but while still getting an important message across. I emailed Abi/Mariam telling them how happy I was with the script and we arranged a day for filming. I was beyond excited at everything that was happening, I never would of thought a few years ago that I would ever be happy and confident enough in my own skin to be making a short film.

On 6th November the day had finally arrived for us to film and to say I was excited would be an absolute understatement! We were due to film a few scenes outside around Liverpool city centre but English weather meant that we had to film inside at Liverpool University. I was so nervous about being in front of the camera at first but after a few minutes my nerves went and I just couldn’t wait to film more scenes. I won’t say to much about the scenes as you can see the film for yourself below, filming was everything I’d wished it with be it was such a lovely day filled with laughter, jokes and amazing people!

I hope you all enjoyed the film and if you did can you please share it so we can get it out there! It’s so crazy for me to think back and look at how much things have changed for me, I feel so blessed to have experienced the things that I have within 2015. I want to take this chance to thank every single person who has helped me during this experience, you’ve all helped me so much and this amazing opportunity for me to get my voice heard would not of been possible without any of you! ❤

 

 

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.

I did it! – Race for life 2015! <3

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As you will know from my previous post a couple of weeks ago, I signed up to do Race For Life again this year on Sunday 21st June. So I thought I’d just do a quick post to update you all on how it went.

The race came around so much quicker than we had expected but me and Sarah were so excited as it’s always such a fun and emotional day. I spent Sunday morning getting ready and just taking it easy before the race then headed to Aintree race course too meet Sarah at 2pm for the big warm. When we arrived as always the atmosphere was amazing, seeing everyone united for such an amazing cause is always such a special feeling!

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As you will know from the previous post I had planned to complete this years race in my chair but in the days leading up to my leg hadn’t been bad so I said I would try my best to at least walk some of the 5K. So I still took my chair with me and headed to the start line under the strict instruction to use my chair if I felt tired but anyone who knows me will tell you that I’m very stubborn and don’t particularly like using my chair unless I’m desperate need. So I ended up walking the whole 5K with just a couple of ‘sit downs’, obviously it took me longer than last years because I was in quite a bit of pain near the end but I was beyond proud that I still managed to complete it all without using my chair. We completed the race in 1 hour 36 minutes and I raised an amazing £190, I can’t think everyone enough for their incredible support and hope that one together we will find a cure for al cancers!

Race For Life 2015!

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If you guys have been here from the start then you will know I walked Race For Life for the first time last year, I absolutely loved the whole experience and atmosphere so much that I promised myself that I would definitely be doing it again this year.

I kept too my word and signed up for this years race about a month ago and was determined to walk it in a quicker time than last year even if it was just by a few minutes then that would be an achievement I was proud of. I’d been training really hard on the treadmill and my time was getting closer to beating last years.

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Sadly though over the last few weeks with all the walking and my recent fall my hip dysplasia has decided to rear it’s ugly head and come back worse than ever, too the point that I can no longer bear weight on my left leg, which too my disappointment now means I won’t be able to walk this years race but I will be still be taking part and completing the race in my chair. Everyone keeps telling me that it’s not how I complete the race that matters but just being a part of the whole experience and raising money for such an amazing cause but there is still apart of me that wishes I was walking the race again this year.

So although like I said a little part of me is disappointed that I can’t walk it, I am still really excited about being part of Race For life again and raising money for such a worthy cause.Good luck and a huge well done too anyone else taking part in this years race and If any of you guys would like to sponsor me then I would be incredibly grateful! I shall leave the link to my JustGiving page down below.

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Birmingham proved there are still selfless people around!

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So before I talk about why the people of Birmingham were so selfless and lovely, I guess I need to explain why I needed so much help, as many of you will know I have hip dysplasia in my left hip which pretty much always causes me pain but about 3 weeks ago I fell onto my left hip and since then my walking and the pain has deteriorated. I’d booked to go to Birmingham for bank holiday weekend with my best friend weeks before my fall and anyone who knows me will tell you I don’t like accepting that I’m struggling so although I could hardly walk off I went for my weekend away.

Me & Sarah are the type of people that when we’re together things never seem to run smoothly and this was no exception due to work on the line we couldn’t get a direct train to Birmingham which meant we had to change at Nuneaton and work 35 minutes for our next train, so after being on my feet and trying to lug my case (never pack light) I knew my leg probably wasn’t going to hold out the weekend before we even got to our hotel. We’d booked to see Dirty Dancing Live on the Friday once we got there which was amazing yet again I must say and I’d highly recommend any Dirty Dancing fans too go and see it, after Dirty Dancing Birmingham city was packed due to it being Bank holiday and Pride weekend so we jumped a taxi to get some food which was when I saw how amazingly kind some people can be, as we stopped the taxi because of my leg the driver could see I was struggling and instead of just watching me struggle like many have in the past, this lovely man jumped out of his cab to help lift me into the taxi, which may not seem like much but too me meant an awful lot!

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After a good nights sleep and painkillers we headed for a day of shopping but after spending two hours in a packed Primark with people pushing there way through crowds, my leg had other ideas and I just fell down in tears in the middle of town, I was an emotional wreck when one of the loveliest things happened, a young girl came out of a shop and asked if I wanted to come in and rest, she invited us both in and got me a chair too sit down. After the taxi drivers help and the woman randomly offering me a seat I was already in love with how selfless the people of Birmingham had been but it didn’t stop there, we headed off to find shop-mobility so that I could rent a wheelchair and enjoy the rest of the shopping trip, it was over the other side of the shopping centre so Sarah went in the hunt of a wheelchair for me unfortunately when she got there Sarah was told they couldn’t give her a wheelchair without me being there but once she explained the situation the women was kind enough to bring the wheelchair too me. So after our day of shopping we headed back too our hotel before getting ready and heading back out for a few drinks in Birmingham and headed back to sleep before we had to head home early the next day.

The following day we woke up early and headed for breakfast by this point having been on my feet all weekend my leg was worse than ever, I could just about walk so that mixed with carrying shopping bags and cases didn’t make for the best situation. By the time we got to the station I was really struggling which meant poor Sarah was left carrying all our bags and I was just about managing to walk but yet again luckily for us the people of Birmingham showed true selflessness and a lovely man came and carried our bags while Sarah helped me walk. Once we got inside the station the man who carried our bags told us to wait there and said he would be right back, we were slightly confused but waited there as he’d said then less than 5 minutes later  the man came back with another man and a wheelchair. I was so grateful by the fact that although I hadn’t requested assistants before travelling, the man had seen me struggling and got me help.  After I’d say thank you a million times this lovely man took me, Sarah and all our bags straight to the platform and then helped me along with everything else onto the train and assured us that there would be help waiting for us at the other end in Liverpool.

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Sadly we live in a world where people being genuinely nice comes as more of a shock to us then people who are hurtful or selfish but just a short stay in Birmingham really did restore my faith and show me the world definitely does still have some wonderful, selfless and caring people in it!

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! ❤