Hello everyone, thank you for finding my blog if you're new here. I'm Stephanie I have Ehlers-Danlos syndrome and I have a history of tongue cancer which was treated successfully but unfortunately left me with several legacies. I have a feeding tube and I have have issues swallowing speaking. I also have a funky sounding… Continue reading I fell Down the Stairs … #218
Hi guys I hope everyone's doing well. I havent the in the blog-post in quite while, but I really wanted to share some things with you.. some super great and some pretty crappy..I'm writing this from Portugal I'm on holiday with my husband and children as well as my parents and my dad's mum, my… Continue reading Portugal Holiday – The Ups and Downs #217
It's no secret that I have bladder issues but for obvious reasons I have chosen not to mention my bowels - but you know what?! EVERYBODY POO's and farts! IT'S A FACT and being able to speak to your doctor about this without being embarrassed is hard - but necessary at times. So lets rewind… Continue reading Taboo… surgery – way TMI – Prolapse Surgery #216
I really hoped that I was going to be able to blog everyday and tell you everything, but to be honest there wasn't that much to say each day as it's an cumulative course. That's not saying we didn't do much, as we really did a lot, were either doing or learning. I will be… Continue reading Balanced Life Program at Nuffield Orthopedic Hospital Oxford April 2019 #214
Balance Life Programme – Nuffield Orthopaedic Hospital Oxford- this is a 3 week course - you attend Wednesday, Thursday and Fridays *Balanced life programme* an intensive physiotherapy, hydrotherapy and psychology course. Aimed at helping patients maximise what they can do within their capabilities and disability or illness. Due to it being so intensive nature… Continue reading Balanced Life Program Nuffield Orthopaedic Hospital for Patients with Chronic Pain.
Your face My initial facial palsy Your face is who you are - and if this changes, which is often the case in head and neck cancers, you're left with not feeling like yourself - you feel unable to identify with the person looking back at you from the mirror. For me the worst was… Continue reading Physical and psychological effects of Head and neck cancers #212
Those that have followed me blog will know I have a plethora of health issues from having my pelvis split whilst pregnant with my son, needing surgery to put metal plates in it to pull then back into place, to slow healing from surgeries, bladder issues, prolapses, dislocations and a subarachnoid spinal cyst and that’s… Continue reading Joining the dots … Ehlers Danlos Syndrome EDS #211
I'm having issues with being exhausted all the time teamed with real memory issues - hoping these tests will show the answers
My yearly cancer check-up was this Sunday, it was an overflow clinic hence the weekend. I saw Mr Fasemade who’s the boss man – i.e the new Mr Moss. SOOO, where do I start, I have been aware of a white patch on my tongue for a while, it’s not sore or gross looking. It's… Continue reading What does this mean? I Cannot Go There…Not Again
This post isn’t about me it’s about family and how they are affected by my ill health and my hospital stays. It’s something I’ve mentioned but recently the effects have been bad have been BAD. As you know I’ve just been discharged after being in hospital for eight weeks. My husband has had to keep… Continue reading It’s not always about the patient !
I can't believe it's been a over week since I last updated and I'm afraid it's gonna be a long one much like my hospital stay. Ok so totally I'm on ward 17 at stoke Mandeville Hospital Aylesbury been here for 5 days or so. I'm going to be here for two weeks at least,… Continue reading A little update 4 weeks in hospital so far!
Now I'm back temperature 38.6 stuck in this bloody hell horrible hospital and nothing I can do about it husband's going to get me a Costa Coffee hot chocolate and I'm sat here in a wheelchair watching the world go by. Fast forward 12 hours and I'm an AMU which is a emergency medical unit… Continue reading Alright had enough now Fekking fedupski. Back I go…..HMP SMH
So where do I start, I was discharged from hospital following the Peg change and promptly bounced back in hospital with a new issue, albeit one I'd forseen and have a personal embarrassing problem but I'm not one to shy away so here goes. I've mentioned before that I Self catheterise and that's kind of… Continue reading Embarrassing post
I only seem to come on here when there's something bad going on, unfortunately here we are again. I think writing it down helps me process things. The first thing I say is as far as I know it's not cancer let me start at the beginning. As you know I've had constant problems with… Continue reading Now a curve ball