Hi, hi guys! I just wanted to give a little bit of an update. So last Thursday I was given a new diagnosis of Spondyloarthritis – I don’t know if many of you would’ve heard of it but it’s all basically connected to the inflammation in the body but originates from the spine – it is an autoimmune disease…and when left untreated it just spreads attacking your whole body. Mine was left untreated for 8 years so you can kinda guess severity levels yeah.
To confuse you guys more Spondyloarthritis is basically the overall name for this disease and within that there are many other types…the best way I’ve heard it explained is like thinking of it for example as the car brand Toyota. So in this scenario Spondyloarthritis is Toyota and under Toyota is many other types like Camry, Yaris, Corolla, LandCruiser etc etc. Well like this, this disease is like the umbrella with many underneath it…and me being the unique self I am, basically went and accumulated a bit of them all. Clearly I’m an overachiever. 🤷🏻♀️Can I blame my mum for this? She always told me to do my best in all things haha – I do not think she meant it this literally 😆
To make me more special it’s like a 1 in a 100 scenario that someone gets this without having Rheumatoid Arthritis or it affecting the Rheumatoid Factor in their blood tests. Yeah my factor was always changing which confused doctors coz it was never high enough to be Rheumatoid. So I’m a 1 in 100 kinda gurl lol. You see Spondyloarthritis isn’t just in the bone its in the tissue, tendons, joints etc etc…which means if it isn’t in the bone, blood tests won’t pick it up. So it makes it harder to find. Even with my factor changing it just confused people, it didn’t lead them to this conclusion, until now. It only took 8 years to find the right doctor to piece it all together and one very long day at the Specialist. Between doctors and blood tests (they stole 10 vials of my blood!) I was at the doctors from 12 noon til 4pm, long long day!! Now all I need are MRI’s and X-RAYS – I’m hoping I can get these under Bulk billing otherwise this will be expensive!
Without boring you guys with a whole heap of information…I’m starting a new medication that may have me being a little bit more inactive on my blog 😦 until I work out my bodies reaction as we increase my dose. I just started my first lot yesterday. Already feeling a little nauseous and headaches have increased. Nothing I’m not used to though…I’m guessing as I increase more side affects may arise but we will take that as it comes. As this is a pretty serious medication (autoimmune suppressant) that is used to treat Lupus, Crohn’s and some Cancers…I will have to be pretty careful of some things, and be sure to have regular blood tests (1 every month and then maybe every 3 months once dosage amount established), as it can strip away and slow the reproduction of white blood cells and important nutrients, which means I will be more open to infections among other things. It can also have big impacts on certain organs in my body (Lungs, Liver and Kidney mainly), so everything has to be monitored while my treatment plan is being established and to avoid becoming too zonked out on meds…because like all medications they like to mess with our head and make it like we have a cloud there instead of a brain. Sooo reading and reviewing could become increasingly more difficult as I increase dosage.
Unfortunately, this illness is one that will always be with me but it is one that can go into a remission of sorts – well not remission but well a ‘less crazy intense’ active phase to be reached…it’ll be a very long road to some semblance of a normal life, but my specialist believes that once the right treatment is found for me, there should be a balance of sorts.
No way am I letting this stop me from reading but I wanted to explain if my reviews become a little less frequent. Please have patience with me…as I will still be reviewing maybe just at a slower pace.
In turns of better news…this Sunday my family and I will be escaping for just under 2 weeks, up the coast to Nelson Bay for a holiday. So we are all looking forward to that! Limited sun-baking for me, but I’m sure we will all have a really great time. It’s been like 2 years since we have been on a holiday so this is a much needed break, for us all.
What’s been happening in your life?
Cheerio for now x