Hello fellow people!
Happy Friday! I wanted to try to do this blog chronologically but some of the posts I want to write about I’m still struggling to string together the right sentences, so for now, I’m going to do an “up to date” post of my latest trip to the specialist.
So after being diagnosed, my insurance decided to “drop me” as they “don’t cover chronic illness”. Bullsh*t is the only word that springs to mind, but hey, after a month of panic and stress, I managed to get myself transferred to the NHS where I met with a new specialist as the one I was seeing privately, was fully booked on the NHS til December, and my liver, and my already fragile mental health, couldn’t wait that long.
I arrived and signed myself in on one of those little TV things, technology of today amazes me, and went and sat in the waiting room. A nurse called me in to check my height, weight and blood pressure. Now, for someone who has danced since the age of two, and has always taken pride in their personal appearance, I notice the slightest shift in my body, whether it be to do with my weight, feeling unwell, spots (grim, I know), I notice it all, so I had noticed, since after my first flare where my original doctor put my prednisolone dosage back up from 5mg to 20mg, that my face had decided changed, as well as my body. Have you ever looked in a mirror and thought “that’s not my face?”, well, that’s what I thought as I saw what used to be a slim face with prominant cheek bones had now turned into a more slightly rounder face, I digress though, as that will be another matter for another post. So you can imagine the shock I got when I googled what 70.9kg into stone was after being weighed to find out I currently weigh 11.1 stone. Before I started treatment, I was 9.5 stone. How on earth had I managed to put on a stone and a half, maybe more in 6 months?! I am the heaviest I’ve ever been in my life. I hadn’t shrunk or grown either so that was a positive, and according to my BMI (which I totally do not believe in) I’m still at a “healthy” weight. (I’m not going to lie, I can be really bad sometimes and eat several donuts in one go, or a whole pizza to myself, or sit through a tub of Ben and Jerry’s, but these are all things I did BEFORE diagnosis and the drugs and they never had this affect on my weight?!).
I went and sat back in the waiting area where I text my mother and boyfriend, absolutely distraught and mortified at my weight gain. I told them both “everyone in this waiting room is old, or looks like they don’t even take care of themselves one bit, I shouldn’t be here”. When I say old, and don’t take care of themselves, I mean these people were literally dodging coffins, and that’s not me trying to be horrible, that’s me just trying to work out how someone of my age, who has been moderately healthy but could put away a whole pizza no problem and always kept fit, was stuck in the middle of this freaking nightmare. I bit back the tears, trying not to cry in front of all these people around me. I am a woman who carries a hell of a lot of pride on her shoulders, so crying in front of people I don’t know is a big no-no. After half an hour of internal turmoil, I finally got invited in by my new specialist doctor. He asked me how I am, to which I said “I’m okay, but a little sad” to which he asked “why are you sad?”. The flood gates opened. I have tried to be super positive throughout my journey and of any outcomes that may occur, but the one thing I couldn’t stand that I knew I probably couldn’t prevent was becoming puffy faced and gaining weight. I don’t think the doctor was prepared to have a sobbing 23 year old sat in front of him, but he kindly got some tissue as I buried my face in my hands and told me he understood how it must be upsetting. This was my first cue as to knowing I was going to like this doctor. He seemed very humane, and not like he was going to rush me out of his door to see his next patient.
Once I managed to pull myself together, we started to go through where I was with my health so far. I found out that my Liver Function Tests had massively improved since May – my numbers have gone in the 1000’s to down to 101 (a normal liver AST sits around 10-40) which is fantastic news! This slightly boosted my morale on my weight gain and puffy face, and reminded me that this is all for the greater good. We then started to talk about my next course of treatment. After seeing how upset I was about the effects of the steroids, and how good my liver is doing, he decided I was ready to start taking the immunosuppressants. These also come with their own set of hazards, but hey, I am just happy that doctor is moving things along. I need to have a blood test done to make sure I’m producing enough of a certain enzyme, and from there, if compatible, I can start taking Imuran/Azathioprine. I need to have bloods done every week to see how I’m getting on, and after 3 months, I can hopefully start weening off the steroids (HUZZAH!). This was the best news.
Steroids affect everybody differently. They can cause mood swings, insomnia, fatigue, facial hair growth and weight gain amongst some more horrific side effects when taken for a prolonged period. I have had a handful of the symptoms, in my mind they’re an evil drug, but unfortunately, for now, they are doing my internals a world of good. So after a few more checks and questions, I found out I could get back to dancing, full steam ahead, woohoo endorphin’s, here I come! As this will help my immune system as the drugs try to suppress it. Also that he agreed with a gluten and dairy free diet as sometimes when the gut becomes irritated, you can become intolerant to certain foods. This man was a breathe of fresh air to me, after hearing from my last doctor not to change my diet, to doing my own research into diet, to then this doctor saying go gluten and dairy free to see if it helps, I just felt so much more at ease. He was also happy to hear that I had stopped drinking and smoking (almost 5 weeks smoke free!).
So I left the hospital extremely happy. Sure I’ve still got to go through some not so pleasant things like another ultra sounds, more bloods, still on prednisolone, starting another drug that comes with a whole load of other side effects, but there is a plan, and I’m ready to roll with it. I’ve decided to join a gym and asked a friend of mine who does personal training to come up with a plan for me to follow so hopefully I can start working some of this extra weight off. I’m going to get stuck back into dance, I am totally changing my diet, I am feeling positive. It’s the only way to be for now. I refuse to let this illness take control of my life, it lives with me, not vice versa.
I hope you all have a fabulous weekend! I shall try and get to writing on some of the bits in between being diagnosed and up until now next, as trust me, there’s a whole lot more to this gal’s 6 month journey so far!
Peace and Love,