Hello lovelies,
Damn it feels like forever since I last gave you a proper in-depth health update doesn’t it? my last one was written in September, isn’t that crazy? a whole 6 and a half months ago..
Usually I write a health update for you every three months, in which I write about my recent appointments and how my healths been. I mean, I’ve had plenty of appointments over the last 6 or so months BUT I haven’t felt like I can write about them which has been difficult. I’m quite a open person when it comes to my appointments, yet for some reason it’s felt like something has been holding me back from writing, which has given me a great amount of anxiety and just a weird feeling in the pit of my stomach. Although, I’ve decided to push through that feeling to get myself back into writing these posts, so here I am!
2018 was another tough year for me health wise, it certainly had its fair share of highs and lows. My health continues to surprise me everyday and is deteriorating at a faster speed than we all had hoped, everyday has been a battle in itself and I’m glad we’ve said goodbye to last year.
2019 i feel is going to be a extremely difficult yet more productive year for me and my health. As you’ll see when I write some of my appointment updates below, we’ve got a handful of things out in place to happen this year and yes, these are going to be hard hurdles to climb over, I know it’ll be worth it in the end. so, let’s get started with the update before I ramble on for much longer.
Gastroenterology Appointment – 21st November:
I feel as though this appointment was an appointment of putting our heads together to try to get a more positive outlook on things, which wasn’t particularly the case but I still came out feeling better than I did going in.
Earlier on in the year, I had a Gastric Emptying Study done – were I had to lay under a x-Ray like machine for 3 whole hours so that they could tract how fast the liquid I drank goes from my oesophagus, into the stomach and how long it takes for me to digest it. This was a unbelievably long test but it’s worth having done if you can’t eat as it can help you get a diagnosis… which it did. After looking over the scan results, I was diagnosed with gastroparesis (which I’d been partly diagnosed with a couple of years ago, but we had to check properly this time). Gastroparesis, is a condition in which the stomach can’t empty itself of food in a normal fashion. This means everytime I eat any solids, it causes great pain and I throw up almost instantly after. It’s certainly not something you’d want to be diagnosed with as there’s no treatment or cure.
Although, being diagnosed with this did mean my consultant arranged for me to have a surgical feeding tube place to help give me the nutrition, calories and vitamins I need to keep my body working. To many I may look a larger size and you certainly wouldn’t guess I couldn’t eat, but my weight comes from a multitude of reasons; steroids, water retention, medication, hormonal problems and illnesses. This is a massive insecurity of mine, but having a feeding tube placed is a must! Despite my size, I’m classed as malnourished and my body is lacking in every way possible – this itself causes many symptoms like exhausted, breathlessness etc.
We are hoping that once I’ve got this tube placed, symptoms of malnourishment won’t be as prominent and my body can begin to fight against these illnesses properly. *fingers crossed*.
Cardiology Appointment – November:
I can’t actually remember the date of my cardiology appointment which is annoying but what I do know is that it was late November.
Unfortunately, my consultant has retired meaning my appointment was with a junior doctor, although he wasn’t too bad so I won’t complain.
For a while now, I’ve been experiencing a new yet unbelievably painful symptom, we’re I can feel my heart racing and can feel my pulse throughout my whole body. It’s an overpowering feeling, which my pulse is throbbing against my body (which is caused by autonomic dysfuncation) and means my beta blockers aren’t working as they should. So, he changed my pills over and so far, I’m not experiencing them as often but they are still there.
We also discussed my circulation. For a longtime now, we’ve been noticing that I can’t sit with my feet touching the floor for more than a couple of minutes before my legs turn black (this happens whilst sitting, after a shower, in bed) and it’s a worry as I can’t regulate my circulation like others. The doctor decided that I need to wear stockings full time, to get the circulation flowing through my body properly.
Unfortunately, after getting measured etc for my stockings, they arrived far to small so I’m STILL waiting for a new pair to arrive.
Maxillofacial Surgeon Pre-Op – 18th January:
If you’ve been a reader of mine for a while, especially these health updates, you’ll know that I’ve been through a real journey with my teeth. From having 4 removed, having a 3 hour operation, then 7-8 years of braces and everything in between, it’s been a real long journey to get my teeth perfect.
During the 3 hour operation, I had chains attached to the teeth which weren’t growing themselves. This meant that the chains were tightly attached to my braces so that they could pull the teeth up. After 4 years of doing so, three of the four teeth came through thankfully.
Due to the forth one not coming through, we decided that I’d have a denture put in its place – a bridge to be precise. Before that can happen, I have to have the chain that’s attached to the tooth that hasn’t grown removed and we are currently back and forth the option of removing the tooth also. This would mean having more surgery (as it’s stuck in my jaw bone, so this could cause problems down the line) so my dentist and maxillofacial surgeon are working this out together, I basically just go with the flow ahaha.
This operation has to count been cancelled 5 times since being told I was having the chain removed, with is unbelievably annoying but we do have a an appointment for the surgery and to meet with my consultant soon. *Fingers crossed* they’ll make a decision and I can finally have my perfect set of teeth by the end of this year!
Feeding Tube Surgery – 13th February:
If your a reader of my blog, you’ll know that this appointment was cancelled. I wrote a blogpost all about it, which I’ll link below.
https://ellegracedeveson.com/2019/02/24/the-reason-why-i-couldnt-have-a-peg-feeding-tube-placed/
Neurology Appointment – 5th March 2019:
this was one appointment I was nervous for after receiving a couple of phone calls off my neurologist back in December. Unfortunately, on the phone my consultant came across very pushy and was quite rude so my anxiety was at an all time high going back to see him. Thankfully, he was very pleasant and was easier to talk too.
since I last saw my consultant, nothing has really changed in a positive way, if anything, my migraines have continued to worsen and are leaving me bedbound 5 out of 7 days of the week. This was the first thing we spoke about and due to being a very difficult case, we can’t work out if it’s one of my illnesses which is causing my migraines to be as bad OR if it’s possibly one of my medications not interacting with my body in the right way. At this moment in time, my consultant is stumbled therefore, he’s decided he wants to send me up to Queen’s Hospital in London to have an inpatient stay at the rehabilitation unit.
When you hear rehab, you instantly think of physio but this isn’t what I’m going to Queen’s for. I’ll be going to Queen’s hospital to work with their neurology team to try and get these migraines under control. Also, I’ll be working with their autonomic team to try and work with my autonomic dysfunction, this is an illness which causes PoTS and my body not being able to control things like: temperature control, sweats, heart rate etc. My neurologist believes I could be staying there for at least 4 weeks to try and get things moving in the right direction.
My neurologist has already written to them stating that he’d like my inpatient stay to be in April, but due to this being a private hospital with only one ward, this isn’t likely. So, it could possibly be May? It’ll be in the near future anyway.
Queens Hospital Website: http://www.uclh.nhs.uk/ourservices/ourhospitals/nhnn/Pages/Home.aspx
That’s the end of today’s Health Update for you all.
I can’t apologies enough that I haven’t done one of these in what feels like forever, I know these type of blogposts are loved by you guys as you get to understand what’s been going on with me & my appointments. I just feel like the last few months have been all over the place, not only with my health but my appointments being cancelled etc.
I know sometimes these posts can come across negatively, but I know you understand that that’s just my life at the moment. I can have the highest highs but also the lowest lows and I’m so hopeful that 2019 is going to be a much better year for me. mentally and physically!
Sending you all tons of love and hugs as always,
Elle xo
