Hospital visits at least once a month; new drugs; new treatment; new doctors...
Relapses; tears; laughter; hope...
Insecurities; positivity; negativity; love...
Learning my limits; pushing too hard; walking sticks; medical mask...
Friendships; braais; naps; working...
Care; support; loss; family...
I wrote a story on my private Facebook page about how I had been judged for wearing my mask out in public - one that I was told I needed to wear as the treatments I am on has destroyed my immune system & there is a high chance of infection.
I had an amazing response to this (with a few negative comments, but I have learnt that you will always get these trolls!)
My main point of ranting & writing what I did? To create awareness for Invisible Illnesses - as we are all fighting a battle that many may not know about. And we need to learn to be kind to everyone that we come into contact with. You never know whose day you may be brightening!
My story was then shared by "I Have A Name"
This was amazingly picked up by "Good Things Guy" (if you haven't subscribed to this blog then you need to do it right now! We all need to remember the good in life!)
This has lead to so many patients coming forward, registering with Rare Diseases SA & we have been able to offer support to all of them & help them realise that they are not alone.
The Times also shared my article, & this completely blew my mind. I never expected my little rant to reach so far, or for the support & love to be poured out from all over SA. Invisible Illnesses are now being recognised; kids are being taught to ask questions & not just point & stare; parents are reading up more; patients are not simply being judged; & slowly slowly the world is becoming a better place - step by step.
Working for RDSA, I have realised the need to create awareness & I will never give up on this! I do not want it to be a "look at me, look at me situation"; but rather for people to try to understand so many of our patients who are in constant battle with their bodies & never give up. They are superheroes in my eyes; & I am inspired on a daily basis by what I hear & learn from those around me.
So please, learn about the different Rare Conditions, ask questions, offer support & know that you are never alone!
To finish off, I really want to share this amazing interview that I had earlier on in the year with ANN7. I was so grateful that I had just come out of hospital as I was feeling strong, & was able to talk without slurring. This was definitely a good day for me & a highlight of my life!
I am still waiting to hear back from my medical aid with regard to the latest treatment plan, so once I know more I will update all of you. We were really hoping the last lot would put me into remission, but unfortunately this wasn't the case. My lung capacity has also dropped significantly, meaning that the muscles in my lungs & diaphragm are very weak & not working to their full potential. This terrifies me, but I am hopeful that this next round will make the world of difference!
As Ellen says, Be Kind To One Another.
Chat soon xxx
