It's not all fun and games and sometimes my mask slips.....being strong, coping....doing so well Isn't always possible... That said sometimes you need to let go be raw be honest and say.....I'm struggling......i did this, this weekend.( I'm having a biopsy on the 25th ) *TODAY IM STRUGGLING WITH ............* There were a lot of… Continue reading The mask slips….its ok not be ok… and finding positives
So last week I was driving home from school run, I need petrol so I pulled in to the petrol station in my local town. I parked really close to the door of the shop so for a change I decided to NOT use my crutches - I have no idea why - I just… Continue reading Drink driving…..
With many conditions that affect mouth opening or sensation, brushing your teeth can incredibly painful or physically difficult . I'm hoping by sharing the things that help me, and in turn this may help you. I've come up with some tips that work for me. It's a lot of trial and error but I have… Continue reading Mouth care….
My Etsy Shop. To Donate To those of you that have been part of my journey from the beginning you know that I enjoy writing, and yes at times my writing hasn't and hasn't been, let's say polished. I've been tired, I've been very unwell but I still wanted to get the words out there.… Continue reading I need your HELP
I went to the dentist this week, something that's so so important since treatment for lots of reasons. But today's the reason was for the x-rays was to rule out a abscess or similar cause. I'm getting phantom tooth pain and pain on my good side which looks kind of like this... My pain is… Continue reading My Face Full of Metal!
THANK YOU isnt enough.... Mr Moss THANK YOU MR MOSS......FROM US ALL.
Having a chronic illness or two it can be impossible to be positive and happy - or so you would think - this is how I see it - how I try and stay positive - how I keep smiling through pain and hard times
Nope this is'nt click bait - here's the story of what happened to my pelvis When i was expecting my son in 2005 I had to have weekly physiotherapy from 19-20 weeks pregnant, for SPD (symphysis pubis dysfunction)also it was known, or PGP (pelvic girdle) pain as its now known ,but there was no real… Continue reading I broke my Pelvis !
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.
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