Health Update – August 2017! 

Hello lovelies, 

I’m back again today with another health update for you. I thought it was about time I brought one too you as I’ve had a few different appointments, test results and general things happen within my hectic life lately which I wanted to share with you all.

Like I stated in my last blogpost – these updates may seem to you that I don’t often get positive news on my health, which at this moment in time I don’t seem to be unfortunately BUT I feel like I want to continue sharing my journey with you through the highest highs and the lowest lows. And currently I’m mostly going through the lows of my journey although I do have a couple of positives which I’ve shared with you below. So let’s get on with the update;

Camera Test For Bladder – 20th Of June

on the 20th of June I went to Haywards Heath (Princess Royal) Hospital to have a camera test done on my bladder to see what’s going on as I’ve been having so many problems. Obviously as I mentioned on my recent blogpost (https://ellegracedeveson.wordpress.com/2017/06/08/health-update-june-2017/) I caused myself some damage/a trauma in the urethra which meant I couldn’t self-catheterise. Therefore, I had to have a catheter placed which caused me to have blood clots, blood and sand like produce coming out of me into my bag so they wanted to check inside my bladder to see what’s going on. 

It’s a very quick procedure, no memory block or general anaesthetic is involved – just numbing cream around the area in which the camera is placed. It doesn’t hurt, it may be a little uncomfortable for those of you who don’t self-catheterise or never had a catheter but if you have, it’s just like having one of them put in. 

Anyway, once the camera had by passed the urethra the doctor was pleased too see that the trauma had healed nicely, he could see the scar that had been left but he wasn’t bothered by that. It was once the camera was in the bladder that’s when the doctors faced turned a funny colour. Everywhere he turned the camera there tissue damage and blood which obviously shouldn’t be in the bladder. The doctor couldn’t be certain wether it was the catheter causing the damage or something more sincere but he wasn’t pleased too see this in a “young girls bladder” as he told me. As the doctor spoke with my catheter nurses, he informed them that I wasn’t allowed the catheter in no longer due to the server damage within my bladder and that I need another camera test done in 2/3 months (it’s booked for the 5th September) to see if the damage has worsened etc. If it has, options will be spoken about!


Stanmore Hospital For Shoulder – 29/30th Of June

I’ll be honest, I wasn’t the most optimistic person about this stay but after just one night I can’t believe the difference in my attitude towards this hospital and my belief within them. It’s incredible.

I stayed in the Rehabilitation Centre which specialises mostly on shoulders; dislocated, broken, re-building after cancer or any other problem to do with a shoulder {or bones}! When I first arrived at Stanmore, i was taken onto my ward 2B which is an all girls ward, (such heartwarming and welcoming teens/ladies I was lucky enough to be sharing a ward with that night) and settled in, went through my files with the nurses and was admitted. Unfortunately we got to Stanmore 3 hours late so I missed all my appointments with the rehabilitation team therefore they decided to reschedule them until Friday morning. Therefore I spent the rest of the day/evening getting to know the people on my ward, getting to know their stories and how this rehab has helped them (which instantly made my mind up about this hospital, even before my appointment with the therapists), before they each had to go off to their appointments. This then gave me and mum a bit of time to explore the rest of the hospital. If you haven’t been to Stanmore before, it’s a very old, shabby hospital. It’s one of the oldest hospitals buildings in London, that being said Stanmore has some of the worlds leading consultants and surgeons! It’s all over the place but works miracles. 

Furthermore, the next day at 11am I had a meeting with the physiotherapist, occupational-therapist and psychotherapist which went better than anticipated. We spoke about my shoulder, the illnesses behind my shoulder, the pain it causes, how it contributes to my daily life which clearly it does hugely (I feel like I’ve become a pro at answering questions constantly being fired at me like this) and it was then that the physiotherapist told me that she doesn’t know if my shoulder will ever completely go back into socket. My illnesses (hypermobility & ehlers danlos syndrome) makes it unbelievably hard, therefore if we can’t get it back into place, instead we’ve decided between us the next best thing would be for me to be taught how to live life with this dislocated shoulder – as right now it’s useless. I can’t do much with it at all, so she said she’s going to work with me to try and help me to gain enough muscle strength back in it so we can do daily life things with it without having it completely in socket. Obviously, we’ll all be working together continuously throughout the two week stay to make this the best I possibly can.

This is my only hope of getting anything done with this shoulder/arm, I’ve been sent away by every physiotherapist I’ve seen (which is like 10) as no one will touch it as it’s too “dangerous” so after hearing the stories of these patients, I’ve got so much hope for Stanmore. 
I go to Stanmore for two weeks on the 23rd of October. Once the two weeks is over, I’ll come home and continue to work with Stanmore back and forth indefinitely. Fingers crossed for some good results, I’m praying so hard.


Heart Monitor Results

I wasn’t actually expecting to get my heart results back until we see my consultant again in September but after speaking to my doctor on the phone and receiving a letter via the post we got the results. 

As most of you know I was diagnosed with PoTS in January this year and put on Beta Blockers due to the severity of my heart rate. Furthermore, since then my heart rate has still been high and I’ve been having awful palpitations which has worried me as I didn’t want to end up back in hospital so I had a monitor done to see what’s been going on. The results came back that my heart is skipping a beat regularly and then my heart is trying to catch back up again – this is causing this palpitation feeling/racing feeling. My consultant has said that my beta blockers need to be upped again and keep it monitored regularly. 


Migraine Update

My migraines have been horrific despite being on the top doss of my treatment so my consultant wants me to go back to my neurologist to try further treatment options. I’m so gutted this treatment didn’t work, it’s such a toxic and powerful treatment so we had so much hope it would work but hopefully something else will *fingers crossed*. 

New Wheelchair – 1st Of August 

Back in 2015 I was kindly gifted an electric wheelchair from Brighton & Rottingdean Lions which I was unbelievably grateful for. After nearly two years of having no independence and being pushed around by my family, it was truly a blessing when they gave me the best gift

Unfortunately, over the years my illnesses have deteriorated and my needs have changed so I needed a wheelchair “suited” more to me. After wheelchair services turning me down multiple times in the past saying I didn’t fit their “criteria” but now after them throughly reading my medical notes and my neurologist sending them my scans which show i won’t walk again (which I don’t believe, miracles happen) they finally agreed I was allowed one of their wheelchairs.  

On the 1st I got my wheelchair delivered and was fully adjusted to my needs. It’s got a higher back, neck rest, lays back, adjustable legs etc which is rather amazing. I’ve been so incredibly lucky! 


And that’s the end of today’s update for you all today my loves, I do yet again apologies for the length of today’s post as damn it’s a long one. Despite it being long, I know you all like to have an update every couple of months so here’s one for you. 
My appreciation, gratitude and love for you guys is truly never ending. I’ll never be able to thank you all enough for our never ending support throughout everything as it means more to me than anything. 
Sending you tons of love and hugs as always, 

Elle xo 

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3 Comments

  1. Cindy
    August 15, 2017 / 6:54 pm

    We love you brave girl xxxxx

  2. August 20, 2017 / 8:09 pm

    Oh honey! You are incredibly brave! I can’t imagine what you are going through! I’m so glad you got a new wheelchair though! Sending you all the love!
    Robyn xx

  3. August 21, 2017 / 8:25 pm

    Sounds like a nightmare- sorry that all this has happened to you and hope your bladder and migraines get sorted soon.

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