It's been a minute ...

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 ...

Could this be the answer ...?

As most of you know by now the search for the best concoction of drugs has been going on for nearly 3 years and up until this point we haven’t had much success. I also started 2020 with the goal of finding more answers to this invisible illness and was also determined to not get admitted to hospital for the whole first year of the new decade (and hopefully many more years to come). 

In January we decided to start a new drug called Infliximab to try and suppress yet another part of my immune system in the hope that I will stop relapsing and all I can say is we are now two doses in and without jinxing it I think this one might actually work!

Infliximab is an IV infusion that runs at 0 weeks, 2 weeks, 4 weeks then every 6 weeks and works by “blocking the effects of tumor necrosis factor alpha (TNF alpha) a substance made by cells of the body which has an important role in promoting inflammation.” Due to reaction control the first four doses have to be run over long protocol and then you have to stay back and be monitored for an hour before you can go home but moving on after that if they all go smoothly they should be able to run it over an hour so will be in and out within 2-2.5 hrs in total. 

Besides me being me and making it difficult to cannulate (3 attempts on both days) I otherwise handled the infusion really well. Due to my history with reacting to medications I get given corticosteroids before the infusion starts. Infliximab is relatively good when it comes to side effects too, the only thing I noticed is the day of the infusion I am pretty wrecked and will sleep most of the afternoon and the next day you do still feel run down but besides that I haven’t had any other dramas.

I now wait one month and will be going back on the 26^th for my third round and then see my specialist on the 1^st of April to discuss how it is going and what the next steps are. After needing to use strong pain medication like endone for nearly 4 months straight I have now managed to go the last two weeks with only needing to have it twice. I have barely any pain on movement in my eyes and the headaches are definitely reducing so everything is looking positive.

Without getting my hopes up; if I can stay off the strong pain relief and keep getting the infusions with no reactions I am hoping I will finally be able to start reducing off my steroids. This month marks my one-year anniversary of being on doses between 30-60mg with no reductions so I think everyone knows just how excited I will be to finally get off them!

Although some times it feels like a never ending battle and that we will never find an answer this is why we need to remember, it is what it is and everything happens for a reason. Yes I have tried multiple other drugs over the past 3 years and had no success and yes I had times that I felt we would never find anything that was going to work but this is exactly why you have to have 100% trust that your specialist knows best and they will find something that works for you. If you ever don’t feel comfortable with your treatment plan or feel like things aren’t working you need to speak up – that’s one thing i've always done (surprise, surprise for the people that know me personally – not something I find hard to do lol) but its true, you are in control of your outcome and you control your destiny.

Obviously things aren’t perfect, I know this isn’t a cure and daily medication is part of my normal life now; but if we have found something that’s going to keep the pain away, stop me from losing more vision and keep more out of hospital I certainly wont be complaining …

Until the next update stay positive, keep fighting and don’t hesitate to reach out – I love hearing about your journeys too.

Lets talk body image ...

In 2020 one of the most common concerns of any young adult especially females is the way they look and the way others view them. One thing I have learnt over the past 3 years going through my medical journey is how important it is not to judge someone on their looks as you don’t know their story and what they are going through.

99% of the time most people would say I am a very positive person when it comes to my illness and everything I deal with. I have this way of just sweeping every hurdle under the rug and accepting the fact it is what it is but trust me if you are ever reading my blog and thinking to yourself – how does she not have bad days, or feel down … I do.

As we all know my battle with steroids and being on them for long periods of time along with the fact it is virtually impossible for me to reduce below 30mg without relapsing has taken a massive toll on my body and the way I look. As you probably read in my post about steroids I struggle constantly with my weight; in between going back to hospital in December to the end of January 2020 I put on nearly 10kg, but the worst side effect from them and what affects me the most is the stretch marks it has caused on my body. Even if you are lucky enough to not gain weight from steroids the longer you are on them your body stops to produce as much collagen which leads to low elasticity in the skin.

At the end of January, I decided I was going to really knuckle down and focus on getting fit again, forgot that I’m on steroids, try my best to lose some weight, tone up and get fit because let’s face it in exactly 9 months on Thursday I’m going to be a bride and we all want to look our best for our wedding day. I was off to a great start, eating well by tracking my macros, being conscious of what I was putting in my body and even went back to my boxing classes. The first week I went twice and managed to do my 10,000 steps every day, and last week I was able to step it up more by hitting my step count every day and attended 4 boxing circuits – I was feeling great and even better I had lost just over 3kg within the first week of February!

As the new week rolled around, I was excited to smash out another week of healthy eating, training and hopefully some more weight loss. I woke up Monday morning, packed all my food for the day and organised my gym clothes ready for when I finished work. By the end of the day I was feeling pretty tired but with that wedding body in mind I went home, got changed, went to the gym and smashed my workout. (side note – the weather on the Gold Coast currently has a mind of its own and the fact I train in a boxing gym that is a tin shed with no aircon, the humidity in there is literally through the roof so although I was a hot sweaty mess at the end of it, I was actually feeling really good and proud of myself for pushing myself to go and give it everything I had). I got home and was getting ready to get in the shower and that’s when it hit me and I literally just broke down – as I was getting undressed I happened to see my arms in the reflection and I hated what was staring back at me. When I first got the stretch marks on my legs I learnt to accept them and would tell myself that it’s okay because no one is going to see them and id tell myself the same thing when they started appearing on my hips but seeing them on my arms in a place that is clearly visible to the world really got to me. I sat on the floor in the shower and just cried because all I could think was no matter how healthy I eat and how hard I train at the gym until I stop taking steroids there is literally nothing I can do to stop them from growing, getting bigger or getting worse and that killed me a little inside.

I am lucky to have such a supportive husband to be who happened to see I was upset and literally just came and hugged me tight and talked me through it, reassuring me it’s all going to be okay and to look at the bigger picture – if it wasn’t for the steroids I would potentially be blind so we needed to be thankful that it is a medication that is easily available for me to access and use (in saying that if I was blind I wouldn’t see the stretch marks so that’s one bonus … lol only kidding).

Going through everything I have and seeing the way I have changed has really opened my eyes and taught me that when I see someone covered in marks, scars, is really big or looks so small they would snap in the wind; to take a step back and before I start to judge them, I now stop and think what they may be going through or have gone through and just think about how lucky I am to have my health and life; although my health isn’t perfect there is still always people worse off than me.

I have put photos below of my arms, legs and hips which was the hardest thing for me to share as it is my biggest insecurity but if there are other people out there experiencing the same thing I want you to know you are not alone. Although it is extremely hard because no matter what anyone says we all know the way we look is important (let face it who doesn’t want to look their best) we need to accept that our marks are a part of us and they make us who we are; they are a part of our story and our journey to finding the invisible fix…

The week that was ...

As the first month of the new year comes to an end I finished it off with a few fancy eye tests, a catch up with my neurologist and 10 vials of blood less.

On Tuesday morning I made my way up to Brisbane fresh faced, bright eyed and bushy tailed for a morning full of eye tests. Over the last few years since being diagnosed I have had countless MRI’s and ophthalmologist visits to track how my eyes are going but there is only so much they have been able to see. The ophthalmologist typically can only measure vision from the general eye tests/looking in behind my eyes and the although the MRI’s can show that there is inflammation on the optic nerve it can’t give the doctors much more information as to what is going on. My specialist had requested I go off to Queensland Electro-Diagnostic & Imaging Centre to have an Electroretinogram (ERG) and a Visual Evoked Potential (VEP). An ERG “measures the electrical responses of various cell types in the retinal” and a VEP “measures the functional integrity of the visual pathways from the retina to the visual cortex of the brain via the optic nerve.” The other great thing about these tests is it can give my neurologist an insight whether or not my condition is a demyelinating condition or not. Both tests were done by placing electrodes in my hair, around my eyes and also a fine thread electrode put in the bottom of each eye. It wasn’t painful at all, just left me with blurry eyes for a few hours as they dilate your pupils and your eyes can feel a little tired/strained as you are staring at moving objects, flashing lights and going between lights on and lights off for 3 and a half hours.

The next day I had an appointment with my specialist to go over my last hospital admission and talk about what’s next. He mentioned that in my last MRI I had just before I was discharged from hospital, there was clear inflammation on my optic nerves specifically at the back point where the nerve connects to my brain. He also mentioned that the second set of check-up tests I had done with ophthalmology showed no improvement in my vision but on the plus side it hasn’t decreased within the couple of weeks between the testing so that is always a bonus.

In other great news my application for my new drug infliximab got approved, so after having my normal monthly blood test plus the pre-screening for infectious diseases I am now all ready to start. Hopefully next week I will get a call with my appointment time and within the next few weeks I will be all locked and loaded ready to go. It’s going to start out as an infusion once every two weeks, then it goes to every four, six, then eight weeks. I still have to stay on all my daily medications (prednisone, mycophenolate, somac, resprim forte and vitamin D) but fingers crossed the longer I am on it, if it proves to be working I will get to start reducing my prednisone … HALLELUJAH !!!

For now we just wait for that phone call with my appointment time but I have a good feeling about this drug, this is going to be the one that works and I’ll be one step closer to succeeding my goal of a full year with no hospital admissions and getting off steroids!