Ok….. I don’t even know where to start to be honest. A lot has happened since my last blog post and if I was to go through it all we would be here for days and you would be bored to death. The reason for the major delay between posts is my health has taken a major nose dive in recent months and I just haven’t been up to posting, I do have an instagram though that I post smaller updates on which you’ll find HERE.
If you’ve read the title of the post you’ll have an idea what I’m about to say next, basically I’ve disowned my right hip, we no longer speak and I do not condone her actions…. No but seriously, my hip is dislocating approximately every 48 hours!!!!!!!!!! I can’t even describe the pain of it, it is intense to say the least. Luckily for me I live with some superstars as you know and they are able to put it back in to place with a little left a bit, right a bit, harder, PUSH!!! If you were listening it may sound like someone was giving birth, which is kind of ironic if you think about it…… Anyway basically I’m struggling to get anyone to help me with it, other than physio. I’ve had doctors not believe my hip could be dislocating ( HELLO have you heard of EDS???) another doctor saw it happen in front of him and said yep definitely dislocated but I’m not qualified to put it back in so he said to mum you go ahead and do it!!!! This is while I was an inpatient in hospital! That inpatient stay is a whole different story…..
I was an inpatient in the Beacon Hospital for just over a week and it was horrendous. I was treated like a piece of crap and was made feel like there was nothing wrong with me. I’m not going to go into the details because I have nothing nice to say and don’t want to be a total negative nancy. I was in there because I started having new seizures and they barely investigated them and actually told me they were all in my head. I asked for an EEG and when the results came in a couple of weeks later I got a phone call from one of the Doctors saying oops actually it looks like you have Epilepsy!! So turns out I wasn’t going crazy, although they nearly made me crazy!!
I have also been over to London twice since my last post. So lets started with London round 1! Mum and myself travelled over for two nights and two appointments. Firstly I went to see a Rheumatologist specialising in EDS, she confirmed my diagnosis and referred me on to all the doctors I needed to see, so nothing to eventful but was just great to speak to someone who knew what they were talking about and understood everything I was going through. The next day I had my long-awaited Upright MRI, it was near Kensington palace which was not far from where we were staying so we decided to walk/wheel our way there, it was a lovely day and we left in plenty of time so decided to stop in Kensington palace for a spot of tea, queue obligatory selfie……
So we had our tea and decided to head on towards my appointment as it was in half an hour and it was a 15ish minute walk but just as we went to leave the heavens opened and I mean torrential, monsoon like downpour, so i decided to call an uber but the driver was stuck in traffic and we wouldn’t make it on time so we said F**K it we’ll make a dash for it….. Picture the scene, Mum running while pushing me in the wheelchair through the streets of Kensington, up and down the footpaths. People actually stopped and looked at us!! At one stage mum decided just to run on the road, looking back its hilarious, at the time not so much. When we eventually arrived (after getting lost) we were soaked through, our hair was a frizzy mess and the mascara running down our faces. Classy birds!! Any who I did the scan, it was horrendous, it lasted 90 minutes. Half way through I dislocated hip, mum popped it back in and we went on with the scan. It was tough, but I did it. I received the results the next day as we were boarding the plane home and it was not a pretty picture. So to break it down, I have Scoliosis, kyphosis, anterolisthesis (click on the word for more info). Everytime my head turns to the left my neck dislocates, everytime it turns to the right it subluxes (partially dislocates), Yep you read that right!!! I have a 6mm cerebellar tonsillar ectopia, a.k.a my brain is falling down my spine. All that is just the beginning of it to be honest but you get the picture.
Two weeks later and we headed back over to London to see all the other doctors, they were great and basically just assessed me and suggested a few things but nothing major. The neurologist was great and he is going to do Botox injections and nerve blocks into my head, sounds like fun doesn’t it!!!! The gastroenterolgist was lovely too and he actually diagnosed me with another condition too….. Mast Cell Activation Syndrome again click for more info. He is also going to shove some needles in me, this time in my stomach wall!! Yay! The physio was also great and just started with some teeny tiny exercises for my hip. Oh and if you were thinking how does Kim get on with the flying here’s a gorge pic of me on the plane……..
I know I know, model material right there!!
A couple of cool pieces of info now!! If you take a look at the picture of the tattoo at the top, that’s my little brothers arm!!! He got a tattoo for me!!! How amazing and thoughtful is that???? For anyone that doesn’t know, people with EDS are called Zebras! So cool I love it!!
Also, check this out!! So I love rugby and my favourite player is Ian Madigan…. for obvious reasons!!!! 😉 So my cousin Ciaran knew this and managed to get in touch with him and get me a signed Leinster jersey!!! Also we may or may not have had a wee twitter convo!!!!!!!!!!!!!
So that’s a quickish round-up of all that’s going on with me, I’m due to go back to London on September 27th for 4 nights and 7 appointments! Eek! So I will deffo let you know how that goes. I promise.
One final note, unfortunately my auntie, my mums sister passed away on August 27th after a brave and courageous fight with cancer at only 49. We will all miss her dearly.
10 thoughts on “My hip goes out more than I do!!”
Great post hun 💜 That is a lot to take in about your back! Will you need surgery? And you have MCAD too! #sicktwins 🙈. I’m so excited to meet up though! Thank goodness for London doctors right 🙌🏼. Oh did you have a horizontal MRI before? Had that shown anything? How did you get oxygen for the plane? My cardiologist said I shouldn’t fly but if there was a way to make it happen I’d be game 👍🏼. Lots of love, Hollie xxx
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Thanks Hollie 😊 Yep it is!! I’m going to see a neurosurgeon when I’m in London to find out, but looks like I’ll be getting a hard collar anyway! Yes MCAD too!! I know it’s crazy how much in common we have! I really don’t know what I’d do without London! Ye the supine MRI should some descent of the tonsils but nothing major and it wasn’t done in flexion/extension or rotation so didn’t show the rest! The air hostesses just give me oxygen anytime I feel faint and let me have it for the whole flight, just not take off and landing! It’s great it really helps when the flight and makes it easier! Ye maybe you should look into it!! xxxx
Kim you are one brave soldier, your always in my thoughts. Xxx
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Thanks so much Yvonne xx
So good that we can keep up with what you are going through Kim.
As part of the medical profession I feel so angry when I hear that doctors don’t take you seriously. Just because they don’t know anything about it doesn’t give them the right to put you down – you go through so much. Every medical diagnosis was new at some point and hadn’t been heard of before.
Keep on standing your ground and make sure they listen to you!
I know there are no magic cures but am still hopeful that you will find some things/ therapies/ drugs that help to some degree.
Think about you lots. Lots of love to you xxxxx
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Thanks so much Lorraine!! You are so right, everything is new at some stage and sometimes people have rare conditions! I really hope they can help me even a little bit too! Lots of love to you xxxxxxx
Hi Kim….you should be writing a book..you have a wonderful way with words…making light of such a serious situation..keep on going on girl👍👍
Love to mum too…💜
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Hi Ann, aw thanks so much but I don’t know about that haha! I’ll pass on your message, thanks again xxxx
Hi Kim , I’m speechless and just want to hug you so much.
I admire your courage and bravery and I can speak highly of you enough.
Keep strong and positive as always.
Always in my thoughts and prayers
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Hey Shola, aw this message really made me smile. Thanks so much that’s a real compliment and I really appreciate it coming from you. Thanks for thinking of me.
Love and hugs