Hello my loves,
I’ve been a little quiet on the health updates recently and I apologise for that. Life has been hectic with hospital appointments and my illnesses have been going in a downwards spiral so it’s been hard to sit and write what’s been going on.
It’s hard to physically sit and tell you what’s going on as it’s hard to picture in our heads what’s happening to my body let alone someone else’s.
Unfortunately so far 2017 hasn’t brought me much positivity illnesses wise but we haven’t allowed it to kick our mental outlook on life to hard just yet. There’s certainly been times when I feel my mental health slipping but thankfully it hasn’t slipped to far out of reach and I’ve been able to keep it in line and keep my positive attitude head on despite whatever news is thrown at us.
Anyway. Let’s get on with the update;
Early February – Letter From Neurology.
In early February we got a letter from neurology to say that after looking over old MRI’s my consultant saw that I had Arnold Chairi Malformation which is a condition where the lowest part of the back of the brain extends into the spinal canal. This causes pressure on the brainstem, spinal cord, and obstructs the flow of fluid which is currently happening to me. He ordered me to have more MRI’s which I’ve had and he’s asked us to see him at the end of this month so hopefully we’ll know more about it then.
Monday 20th February – Stanmore Hospital
On Monday 20th February I went to Stanmore Hospital in London to meet with a shoulder specialist to see what they can do for my permanently dislocated shoulder.
It was a good meeting and was defiantly worth the journey (thankfully), she believes i would need to have intense rehabilitation to regain the use of the muscles surrounding the shoulder. she continued to say I could possibly be part of a trial their running at the hospital at the moment where they open the arm up and tighten the muscles surrounding the shoulder ball so that the muscles are ready to hold the ball in place without it slipping again. Unfortunately there is damage to the bone of my shoulder where it’s been out of place for so long and has been rubbing up against other bones so she does believe I might need a shoulder replacement but we would start with the rehabilitation first.
Where my arm has been out of place for so long, it’s become a comfortable position for me to keep it in, so when she was yanking my shoulder back into its proper position and forcing it to stay there, it caused a great deal of pain. The next day I wasn’t able to move the right side of my upper body where she had forced it into a place it hadn’t been for so long. Ouch! But, because I’ve got so many other illnesses and need 24 hour care, they don’t believe they’ve got the facilities at the rehabilitation centre to allow me to stay there so within the next few months I’ll be staying there overnight and meeting with the entire team to make a plan and hope that they can come to a conclusion for me. I barely have use of my right arm anymore so the treatments are needed as this will give me some more independence back that I haven’t got right now.
Monday 27th Of February – Gastroenterologist.
On March 3rd I had a meeting with my gastroenterologist. to be honest, this was a hard meeting and left myself & my mum feeling mentally drained. My body is physically in a critical state, my consultant has never seen anything like this before which makes things 10x harder for us all. She has decided that treatment has got to be upped and by upped I mean increased massively. I won’t go into details but she’s told me this treatment will leave me bed bound, weak, severely sympathetic, incredibly ill and living a life which isnt what a teenager should have. My body has taken so much treatment over the years that I don’t know how much more my body can physically tolerate before shutting down completely. My body is tired, weak and is physically deteriorating every single day. She’s decided that I need to give this treatment a 3-4 month trial, she isn’t hopeful it will work but she’s got to give it a go before she moves onto something else. Yes I know, sad isn’t it but this is the life for someone who has paralysis as severe and rare as mine.
My symptoms have physically been knocking my body to pieces and she’s told me none of the symptoms I’ve been having will get any better until she can get me to a comfortable state and in her words “this could take years”, even once she’s gotten me into this position there’s no guarantee that my symptoms will get better. She’s an amazing doctor and I couldn’t knock her for her determination to fight these illnesses which are crippling me but these aren’t curable – treatments and operations will be what rule my life and that’s what never gets easier to hear.
Although, one good thing did come out this meeting – after reviewing my recent imagining work I’ve had done which she was utterly shocked at, shes finally agreed that after 4 years I’m allowed to be put on proper pain relief. So after talking through the options, we all agreed strong pain relief would be for the best due to the state my body is in. Ive been put on pain relief patches, I’m starting at a low dose and building up until the pain is a little better than what it is now. Tolerable I should say.
Monday 6th Of March – Urology.
On the 6th of March I had a Urology appointment which went a lot better than expected. Last time i met with my bladder consultant we clashed quite abit and I refused seeing him again but this time was much better which instantly put me at ease. For those of you who don’t know, I self-catheterise due to my bladder being wrapped around my bowel and I have severe bladder dysmotility.
For the last year I have had constant urine infections (UTI’s) to the point I’m on three or four different antibiotics a month for different bugs being picked up and unfortunately this can’t be stopped when I’m catheterising but it’s concerning as it can begin to destroy my kidneys and I’m becoming antibiotic-resistant so he’s going to put me on a full time preventative-antibiotic which I’ll take at nighttime to prevent infections. If during this time I still contract infections then he believes my only option is to have a surgically fitted catheter which comes out my stomach into a bag. Surgery on my bladder has been an option for me for a while now due to being told my bowel is no longer curable so we’ll see what the next few weeks bring.
Despite this being said, he’s going to send me to the catheter nurses to have a chat about trying some new catheters out and seeing if they will work better for me then the ones I’m using right now as I’m struggling passing urine despite catheterising numerous amounts of times a day. I suffer such horrific pressure pains, sharpe pains and aches in my bladder due to leaving urine behind when catheterising or not passing urine at all so he does believe surgery will be the best option for me as these pains could possibly ease with surgery. No one knows for sure though.
Tuesday 7th Of March – GP Appointment.
On the 7th of March I had a double appointment with my GP to go through/over a few things and talk over medications etc. This appointment went so well and I’m so thankful to have the most amazing GP battling my cases beside me.
Firstly, my GP is going to get in touch with my gastrointestiologist about getting me referred to a surgeon to talk through some surgeries I’ve researched and thought about for the last year now. I haven’t had food for months, I can’t tolerate my feed and I’m absolutely starving. I’m getting horrific hunger pains to the point I’m rocking at night due to them being agonisingly sore so we spoke with my GP about getting a feeding tube placed into my intestines via my stomach wall which she agreed would be a brilliant idea as I’d be able to have all my medications and treatments via that tube without throwing them up again too. I also want to be referred to them to talk over a colostomy bag but I’ll talk about that more another day.
We then went through and changed some of my tablets, upped some of my dosages and added some more to my list as so many more problems have raised that so many tablets are having to be changed etc that we have to have doctors appointments to do so.
Lastly, we spoke about this horrific sickness I’ve been having. Unfortunately as I’ve mentioned above, my gastrointestiologist did tell me this won’t get better and is doubtful that even if she did get me in a more comfortable position that this would stop completely but it’s worsening every single day and I need something to ease it at least. Not only am I bursting the blood vessels around my eyes, but I’m bursting the blood vessels all over my face to the point I’m so self conscious to go out. I’m a beetroot colour and nothing will hide it, it’s horrible – I’ve tried every single anti sickness on the market, even the trial drugs haven’t worked for me so we’ve decided to give injections a going hope that these might slow my sickness down a little as I know nothing will completely stop it. We are learning how to administer these injections Monday (13th) so I’ll let you know after a few weeks how their going.
I apologise that today’s post was a long one but I know how many people wanted an update so I thought I’d do one today! These are the four main appointments and letter I’ve had recently which have all had their good and bad parts, some more draining then others as I can imagine you’ve guessed but I’m lucky to have a good team.
Thank you so much for your never ending support, love and encouragement throughout this battle, it means everything to me.
Sending tons of love to you all as always,