Hello my lovelies, how are you all?
As you may have noticed the last month has been incredibly hectic for me, I’ve had two to three appointments a day at different hospitals which has been very emotionally, mentally and physically draining on myself and my family. we’ve continued to stay positive throughout it all although some of the things were hard to hear. As a family it just makes us so much stronger, closer together and more determined which is one thing I thank my illnesses for.
Anyway, I’m here today to share with you a massive update on what’s been happening and who I’ve seen as many people have asked me.
- Wednesday the 24th, i went to Chailey Heritage: it was so lovely to go back and meet with the team that have continued to fight for me. Unfortunately we didn’t receive the news we was hoping which was to receive further treatment there but due to my age it would be impossible. Thankfully though after a few hours talking with my team we come to the decision that they will refer me to a bunch of people to help with my case and write to people involved in my care about steps we need to take to try to move forward with my life. Although there are many factors to my care, nothing seems to be moving forward to try and help make things easier for me, everything has come to a stand still since the children’s can’t cope with how complex I am so we’re hoping Chailey can give them a boot up the bottom!
- Thursday the 25th, exam results day; since first exam Id taken, I continued to tell myself I’d failed. The exams I’d taken this year were awful and the actual exam board admitted that themselves so in my heart I felt gutted as I knew the results wouldn’t turn out the way I’d planed. But… I was completely wrong! THANK GOD. That heart throbbing moment ripping open that envelope was so daunting, my stomach sunk but thankfully to my surprise I’d passed everything and I genuinely couldn’t be happier. I got a C in Chemistry, C in Physics and a B in Biology! Which means I’ve got into my courses for this coming year and I’m able to continue forward with my education. I’m now taking ALevel Chemistry, Biology & Maths for Chemists which should be interesting. All I can hope is that my grades next year can be as amazing as this year and my illnesses don’t let me down. *fingers crossed*
- Monday the 5th I had my first appointment with digestive diseases (adults) which I was very nervous for. I’ve had a rubbish experience with adult doctors so it was a pleasant surprise when my new consultant was so lovely and caring. finally! we had a long discussion about my bowel and my past tests I’d had and she was disgusted with the way I’d be left. Unfortunately I yet again received the news that I won’t ever get better, this will continue to be my life and although I have already been told this (always held onto hope it wouldn’t be true) it just never gets easier to hear. After talking over my current treatment plan it was decided that we’re going to completely change it to a new treatment range with a brand new drug which is new to the market. This may sound good to some but after her explaining each new treatment I’ll be having, it came to the newest drug which is an incredibly strong and “brutal” (as she called it) treatment which is the harshest one around. she continued on to say it will cause me agonising pain on top of my pain i already deal with and could ruin my chances of going back to college. Due to my paralysis pain medication isn’t something we can look into so learning to deal with it is going to be a challenge. This will be a trial for 6 weeks, after 6 weeks we meet again and if it doesn’t have any effect on me (which she believed it might not but needs to be tried) then we are looking into surgery to have a colostomy bag fitted. It was a long and emotional meeting I must admit but it was nice to finally have someone whose completely honest with me and genuinely cares about my quality of life.
- Tuesday the 6th I had another two appointments at the hospital. One at the The General Hospital and one at the Sussex County. But firstly ill start with The General Hospital; as I’ve explained in the past you’ll know that my right shoulder is permanently out of place due to a condition I’ve dealt with since a baby. The last couple of months I’ve been receiving physiotherapy for it with a top shoulder specialist. On the 6th I had an appointment with her and she’s told me my shoulder is beyond the help of physio and I’m being referred to a surgeon who will make the next decision on what to do. It’s currently out of two options, the first being having surgery to pin or replace my whole shoulder or secondly to be referred to a specialised hospital called Stanmore Hospital in North London to meet with them and they decide the next steps. Due to my shoulder being out of place 24/7 it’s completely useless, I don’t have much use of it so the plans are being made very quickly so I can regain my arm again. Now to the Sussex County, what a nightmare. A couple of years ago I had a three hour operation on my mouth were they uncovered and bonded whilst also removing gum, surrounding bone and tissue from my mouth. Unfortunately this operation didn’t work so I was referred to the plastic surgery team again to re-do the operation. So we went today to see what’s happening, after them running 45 minutes late, I was told I needed an x-Ray and then go back so two doctors could make a decision. Long story short, the operation is being done whilst awake just receiving local to ease the pain in hopes this time the operation will work. I bloody hope so, fed up of the constant back and forth with this mouth op.
- Wednesday the 8th, I had the dietitian which was fairly good. For the last year I’ve struggled unbelievably with my weight, I’m continuing to put on weight according to the scales (but when being measured for the circumstance of my arm ect, I’m actually loosing weight! confusing I know) despite the fact I can’t eat and feeds through my NG aren’t happening as I can’t tolerate them therefore I’m not receiving much nutrition accept from a few drinks a day. After talking about the fact my weight gain is due to my 6+ hormone problems, my digestive tract paralysis and my treatment it was decided I must try a new combination of nutritional products to try and maintain some balance in my vitamins and calories. We will continue to monitor my weight loss / gain over the next few months and continue to change methods of receiving nutrition. I also picked up my new glasses which I absolutely love!
- Monday the 22nd of August I had a Meeting With The Gynaecologist as a couple of months ago I went to the doctors regarding my P’s (periods) due to the fact this year I’ve only had two and the two I have had have been absolutely agonising, lasting longer than two weeks and I’ve ended up bed bound for days. Considering I’m on no pill & implant was taken out last year I should be having one every month so we ended up getting referred to the children’s to meet the gynaecologist. On the 22nd we met with the consultant who has told me I need a scan on my ovaries due to me having polycystic ovarian syndrome to see what’s happening and then to meet her to make a treatment plan. On the 10th of September I had a ultrasound on my ovaries, unfortunately due to digestive tract paralysis I’m extremely swollen meaning the ultrasound couldn’t even find my ovaries through the swelling and my bowel being so large & full (crazy I know). So I’ve now got to be referred to have an MRI to try and see if my cysts have worsened or stayed stable.
I do apologise today’s post was such a long chatty update but I do feel throughout my updates I can share with you a massive part of my life and also raise awareness for my illnesses and what they do to my body.
My illnesses are honestly such hard work and at this moment in time my poor body is a total mess. but right now nothing makes me more determined to kick butt and live my life despite my illness than this broken body. It does make each day so hard especially with my constant pain & symptoms but, I couldn’t ever have got through what I have without you all backing me. From the bottom of my heart, thank you for the support and encouragement you give me. It goes without saying your all so special to me and I love you very much.
And on that note I’ll leave it there today. I’ll continue to update when I can wether that’s just on social media or on here too.
You can follow my social media! My Facebook, Instagram & Twitter are all @elledevesonx
I hope your all as well as can be.
Tons of love as always,