My journey so far...
(yes this title is a reference to my favourite TV show, so if you got it then you're pretty awesome.)
I've already gotten over 70 views on my intro post, which is amazing!!
This post is going to be all about me going through my different stages of life, whilst living with Cystinosis. Soon I'd like to do some more 'fun' posts though!
Thanks for reading...
---
 |
| Me: demonstrating the coolness since '96. |
Newborn: When I was a tiny bundle of joy (I still am the joy part, and I'm still quite tiny really) everything seemed normal. As I began my early years my mum did suspect a few things were a little odd; I wasn't eating very well, I was always thirsty, and plus the constant need to keep going to the loo, with the many water infections... But, the Doctors said it was nothing, and I was my parents' first child, so they had no idea...
Aged three: This was the age that I got diagnosed. It finally happened when we moved house, and therefore moved GPs and Hospitals. My soon to be Paediatrician had me diagnosed when he sent me to get an eye test, where they obviously discovered crystals.
I don't remember any of this stage, but my parents have told me how upset they were. I can't imagine being told that my child (if I had one) has an incurable medical condition.
Since I was diagnosed so late, this meant that when it came to eating all my mum could think to do was persevere. She has told me that if I was offered a feeding tube at an early age she would've accepted- but, in the long run I'm quite glad that this didn't happen.
So, inevitably then came all of the appointments.
 |
| Me: as a little toddler. |
I would have blood tests and appointments with my doctors; the appointments were done at the 'old hospital' near me, which is now used as posh apartments, and the blood tests at the 'new hospital' where I now frequent. My parents have told me that I used to know which one we were visiting whichever way the car turned- and, as you may have guessed, the blood tests weren't my favourite of the two.
Tip: use Emla Cream to numb the blood test site. Keep it on for about 30-60 mins, so apply it close to before you leave the house, depending on where you live. If your child/you don't like the usual plasters that are used to keep the cream in place, my mum used to wrap our arms up in cling film. It works, and is painless to come off! :)
 |
| Me: in Year 1, with a front toothless grin! :) |
Primary School age: My parents didn't even know if I would make it in school, and I'm proud to say that I did it! At first I used to take my Cystagon mixed with yoghurt and parsley, and my mum would come to the school at lunch time to give it to me. In my experience schools aren't the best at dealing with Cystinosis, but I hope yours is a lot better.
When I was seven, I started to swallow capsules. I still remember standing at the bathroom sink upstairs- swallowing it and then looking down to see if I had dropped it instead. I much prefer taking tablets as opposed to liquid medication, but everybody is different.
 |
| Left to Right: Me and my sister waiting in the hospital, with our High School summer uniforms on. |
High School age: High School can be hard, for anyone. I did get picked on for my height, but at the end of the day they don't understand. And, a lot of people don't care. You've got to stick by your friends and family to help you through, and if standing up for yourself (kinda pun intented there) doesn't work, then just mentally kick their tall butts!
In year eight I had my kidney transplant. Work wise it was the best time to have it, since there were no exams going on in that year of school. I won't go into too much detail about my transplant in this post, as I'll make a separate one about it, in the near future. If you or your child has a lot of time off school- take it from me; don't worry. It's important to obviously take your exams, but the first two
 |
| Me: just a few days after my transplant! |
After my transplant I spent a good few months off school, and after going back for just one week I ended up needing to go to hospital again, so I practically missed all of my year eight.
Taking my medicines at school wasn't a problem, mainly because I didn't need to take them there. At first if I needed to, I would go into their medical room, but after a while I just kept them with me just to make things easier, and more discreet.
Also, in 2012 I did experience acute rejection, as well as antibody rejection in my kidneys... But, this happened in the summer holidays (I think), so in the end this didn't affect my schooling anyway.
So, try to find a good couple of trusting and loyal friends (insert sarcastic laughter here) to help you through, and you'll be fine!
Stay in school, kids!!
College age: After finishing High School in 2013, I started College in the following September. I studied BT
 |
| Me: in 2015, wearing my #AlwaysKeepFighting t-shirt, which is for a really good cause, and the name is close to my life as well. |
There's not much to really say about this year of my life, medical wise. I had an alright time at college, and as for day to day life as a seventeen year old with Cystinosis- I took (and still do) my tablets, and got on with it. :)
My age now: Well, hello present day! Rewinding from now just a little bit; after I left college I eventually got a job, which I managed to get last November. I work in a nursery, and I'm still plodding along with my daily meds and regular hospital appointments.
As I'm eighteen now, I've recently transferred to the adult clinic. I don't want to dishearten any parents of/children who haven't yet completed their transfer- but, so far I'm disappointed to say the least. Like I said with the topic of my transplant- I'll make a blog post about this at a later date. (Obviously I still get medical care and appointments, so please don't stress about what I just said, and if you have any queries you can always just ask me!)
 |
| The selfie that I took from my hospital bed, last night. |
Recently I've been having a fair few medical issues, From around the time I started work I've been getting a lot of infections (yes, I know that children and my low immune system thanks to being immuno-suppressed doesn't really help the equation here), and I've been hospitalised twice just a few weeks ago, and literally just two days ago.
So, although I'm hitting a bit of a rough patch right now- I know that I'll come out of it, just like I always do.
I hope that this post was interesting to read, and not too long! I also hope that it didn't lack information, because it's late and I guess I could've explained myself a little more- but, there's still plenty of future blog posts to come!
Thank you so much for beginning this little blogging journey of mine with me, it means a lot! :)
I'll post again soon, thanks so much for reading!! :D
-Sam xx
Comments
Post a Comment