Hi guys me again, I know it’s been a minute since we last spoke; crazy how quick time fly’s and how much can change in just a short few months. Who would have thought within the first 4 months of 2020 we would not only be dealing with our normal daily battles against our invisible illnesses but in Australia fighting fires, floods and now the ever unfolding Covid-19…? First and foremost, before we get into tonight’s blog, I want to say I hope you are all doing well and staying safe!!
Just as one thing starts to be looking up the world decides to throw another curve ball at us, but this time it’s something no one seen coming and unfortunately something no one really knows anything about. I’m sure by now no matter where in the world you are, you would have been or still are in some form of self-isolation as we are the “lucky ones” who get medication that helps prevent us from getting sick but also weakens our immune systems to the point if we catch a normal sickness our bodies aren’t there to back us up. As no one knows much about Covid-19 I’m not going to dribble on about it but I did just want to address it as I know for a lot of you these may be scary/uncertain times and it’s not only the fact that we may be afraid to catch it, for a lot out there being stuck inside can be challenging at times too. Let’s face it though, out of everyone we should be able to deal with this the best as we are used to curve balls being thrown at us so think of this as just another mountain for us to climb which will inevitably make us even stronger on the other side.
Today is my last day being 22 and I was thankful enough to spend the start of it in the day medical unit at my local hospital. I know some of you might be reading this thinking … thankful – who would be thankful to spend their morning in a hospital bed, but I can honestly say hand on my heart that I was. This is because for the first time in over 12 months I have been able to reduce my steroids below 30mg with no sign of a relapse and that is thanks to Infliximab and that’s exactly what I spent the first 3 hours of my day doing – getting my fourth dose. Now don’t get me wrong my day didn’t go exactly how I planned, I had woken up early to go for my 7km walk so I had completed my 10K steps before treatment in case I was too tired in the afternoon so I thought I was in for a good day with no hiccups. Then it came time to leave, I allowed 25 minutes to get to the hospital with hope to get a coffee on the way (I know I don’t allow myself enough time, it’s something I plan on working on in the future) but no, I arrived at my coffee shop to see a line longer than route 66, it’s like everyone on the Gold Coast decided to try coffee for the first time in their lives – I decided it wasn’t worth the wait and it would have definitely made me late so we carried on and my Fiancé dropped me off at the hospital. He usually always comes and sits by myself but due to our dear friend Corona you currently have to fly solo during treatment, boring I know but I guess at the end of the day everyone’s safety and health has to come first. Next we have my best friend the cannula, my favourite nurse who I like to refer to as “Smiley Miley” was there and is a wizard at cannulation so luckily, we were able to get one in on the first attempt. Although we got it in and were able to flush when the infusion started it felt like my vein was on fire and everything we tried wouldn’t stop it so we couldn’t continue. Back came “Smiley Miley” who managed to somehow find a second vein in my veinless body and got us back on track. Neither of the veins wanted to bleed which meant we couldn’t take blood for the pathology tests we needed prior like normal, nevertheless it was all smooth sailing from here. As it was my fourth dose, we were able to run at the quickest rate which meant it only took just over an hour to infuse and I was done. We tried one last time for blood at the end, and although it was a mission we got just enough!
Despite everything going relatively well during treatment when it was time to go home, I just sat on the couch and cried. I tried stopping it but there was no escaping it the tears just kept rolling down. I felt defeated, you may be wondering why, everything seemed to go well what is there to be sad about? To be honest it was the most pettiest things but I just was sitting there thinking today was supposed to be a good day but I couldn’t get my coffee, once again the cannula was never a simple process and I have now been off work for 5 weeks and just want to go back to living a normal life but as my nurse said with the Covid-19 situation no one has a crystal ball and it’s all a big guessing game. (it probably doesn’t help I’m a female and its currently my time of the month where my hormones go into overdrive…) It was at that point Darren (aka. Fiancé) looked at me and said, think about the positives; your treatment is working, we live in one of the only places in the world where you can get it for free, your healthy and reducing your steroids which is all you’ve been wanting for months! It was at that point I took a deep breath in and thought; you're right, I am lucky.
We are always going to have times where everything hits us and you think to yourself “it’s always one thing after another” or “why does it have to be me” and that’s okay, because it’s totally normal and to be quite honest if you went through the battles we go through without ever having down times I wouldn’t be able to consider you human. The most important thing is letting those moments out, taking a deep breath in and remembering it’s going to pass while focusing on all the good things going on in your life. Of course, it’s not flawless and there are always going to be people out there who have it a lot better than us, but our lives are perfectly imperfect, and we cannot forget that. There is still a lot to be grateful for and there is always someone who has it worse than us so never forgot to sit back and smile. Remind yourself that these are just bumps along the road to making us stronger and we are a group of relentless human beings who go through a lot more than most but will always come out the other end.
For now, I am going to enter my 23rd year around the sun focused on reducing my steroids and losing the mood face - September 1st is the last day on them (not that I am count or anything), continuing with my new treatment and hopefully staying Covid-19 free. Stay safe, positive and we will chat again soon ...
