The next step?

I don’t want to be sick anymore. I’ve had enough of it. I’ve had enough of the days where getting out of bed seems like climbing Mount Everest, where showering is my greatest accomplishment. I’ve had enough of the days where all I can think about is the pain as it consumes my body and takes over every aspect of my life. We tried treating my joint pain with plaquenil, a hydroxychloroquine used to treat and prevent malaria but also for the treatment of rheumatoid arthritis so we thought it might work for me. It was the first step, with low risks and hardly any side effects and thankfully I didn’t get any, but it also didn’t work. So we had to go onto phase two, corticosteroids and chemo. This has been the longest and toughest of journeys with many side effects and sleepless nights that have left me wondering, “What the hell am I doing?” Doses were changed constantly and my body was put on a rollercoaster as it tried to keep up with all the medications. But some of them worked. The only downfall is that they only worked when they were kept at a high dose.

Being on high dose steroids isn’t good. Your mental state is altered and the term “roid rage” certainly comes into play. While I may not have become aggressive, I most definitely felt myself changing in ways I never had before. I experienced anxiety over the smallest of things, thinking and making decisions took extreme effort, and my thought process just became sluggish. All of these factors, along with the fact that I developed steroid induced muscle atrophy, meant we had to bring the dosage down to as little as possible. I made it to 17.5mg before I started to experience extreme pain. That may sound dramatic but it’s true. And when speaking to my immunologist I explained that I wasn’t sure if it was because I has gotten used to not being in pain for a little while, or if it had gotten worse, and he said he understood what I was saying. To actually hear him say that, and not have to try and word my thoughts was such a relief!

But now what? We’re at a point where if we lower my steroids I’ll get worse, but if we go back up I’ll develop the same problems. I’m currently on 15mg of prednisone and 20mg of methotrexate. We can’t increase the methotrexate anymore because I get nausea that makes eating a daily mission and I already struggle with a low appetite that we can’t risk adding any more factors because weight is already dropping off of me. Starting this trip the goal was to get me off steroids, or on as low a dose as possible (preferably below 10mg) and solely on the methotrexate to manage my joint pain. And we had the time to do that. With travelling we could spend the weeks needed to slowly taper, because that’s the key thing to coming off steroids, doing it slowly. It took me 16 weeks to get from 25mg to 15mg as every four weeks I would lower my dose by 2.5mg, and if I was to continue going down it would take even longer. Every four weeks I would go down 1mg, so it would take a further 16 weeks to get to 10mg. This is so my kidneys wouldn’t get the shock of their lifetime and my adrenal glands would start to function again. But I still got fatigue and weakness, which is wonderful because that’s apart of my usual symptoms.

My immunologist wasn’t happy with how I was doing, in fact he was rather displeased that I had gone back to spending my days in bed and was struggling to physically get out. The first time he suggested IV steroids I baulked at the idea. It was over a conversation about my cough that wasn’t going away so he sent me for a lung function test and CT scan to check for chest inflammation, but he ultimately said that if I were still in Sydney he would want me to try IV steroids. I’m obviously not, so that option wasn’t too accessible. I went for the tests then phoned him for the results. Lung function was all clear but he still hadn’t gotten my CT back. He brought up IV steroids again and strongly suggested that I should do it. Here’s the thing about Dr B; I trust him. I can walk into his office after being on prednisone for two months, moonface and all, and the first thing he says to me is “hello chipmunk” and for whatever reason I’m not offended. He’s the doctor who can tell me that the goal is to get me sneaking out, drinking and partying, and doing things a twenty year old should be doing. So when he turned around, for the second time, and suggested that it’s time to try something a little more intense, sure I was scared (I still am) but I trust him. I know he has weighed all the options as well and knows that it wouldn’t be in vain.

We’re still trying to organise the whole thing, me going back up to Sydney and then being inpatient for a couple days and mum getting off work, then potentially staying a little longer so I can see him outpatient just to make sure I’m okay and that everything is under control and my body has handled everything well. The hold up at the moment is with hospital admission, but I have an immunology registrar on my side that is fighting my case and advocating for my admission. You see I don’t technically have a diagnosis. I don’t have lupus, I don’t have scleroderma, I don’t have sjogren's, but I have a little of everything. For this reason I fit under a weird category that people in suits don’t understand and can’t grasp, nor do they realise the reasoning behind the need for my admission if I’m currently in rural Victoria, but the hospital is in Sydney. The simple fact is; that’s where my specialist is.

The whole thing is daunting. It’s scary. And it’s certainly not something I thought would happen three months into our trip around Australia. Mind you I didn’t expect two hospitalisations in the first month of the New Year either, but that just shows how unwell my body is doing and that steps need to be taken. When speaking with mum and Dom we all agreed this is what needs to be done, my health is too important and they’ve both seen me struggle these past few weeks and get dramatically worse and traveling would just be impossible in this condition. So sort it out now, while we have a spot to “live” in, and hopefully we can continue on with the trip with me in a state where I can actually enjoy what we’re doing. Because that’s also what it’s come down to, at the moment I’m not enjoying this trip or any part of the days. I shouldn’t say that. But waking up in pain and going to sleep in pain, and getting no rest from it is just plain exhausting. So I don’t want to be sick anymore. I’ve had enough of it. And I know I’ll most likely never be given the luxury of returning to being 100% healthy, and that’s fine, I’ve accepted that fact, but maybe getting a little better means I have to be hooked up to IV steroids for a couple days so that’s what we’re going to do because I don’t want to be sick anymore.