A day for us

  Yesterday was rare disease day. A day where all around the world people raise awareness for rare, orphan diseases. For me, it was a day of reflection. 

To say the last 2 years has been difficult is an understatement. Even as my physical condition has improved, I am aware of my deficits 100% of the time. I can tell you the date of my next neurologist, hepatologist, urologist appointment off the top of my head because everyday I’m one day closer to seeing a specialist and hoping for answers, praying for cure.  I smile and say I’m fine when I’m really scared to death of waking up tomorrow blind or paralysed. 

There are so many of us in the same position. A rare disease is one that affects less than 0.05% of the population. However, combined, there are thousands of us in australia facing the same unknowns, the same fears and anxieties. 

I’ve learnt to appreciate the small things; like time with family, perfect weather, the beach, a sunset, a win at volleyball. I see things differently now. 

I’ve also met some incredible people who are in the same position. They have taught me that life goes on despite its hardships. That its ok to be upset, even angry, but to take it one step at a time and live with what youve been given. Even when we’ve lost people in our group to illness, I watch as the rest of us pick up the pieces and appreciate life even more, somehow strengthening our bond. Yesterday was a day for us. 

Rare disease day is a day to talk about us. To raise awareness. To know about us. 

Living with nmo:

So, that was rare disease day. In other news, stay tuned, things are changing, I’ve had lots more testing and I think we are closer to answers now. Over the next few weeks I have lots of reviews, another biopsy and hopefully a solid diagnosis, and then…. Maybe, finally… treatment. Fingers crossed for me! I’m nervous but excited! 


3 thoughts on “A day for us

  1. Pingback: A day for us | jesstrew's Blog

  2. Louise Morgan says:

    I share your nervousness and excitement and look forward to hearing some better more positive news in the near future. So with fingers and toes crossed I hope and pray that for your sake and others in similar situations that a solid diagnosis and treatment plan is just around the corner. xx


  3. Cathy Herbert says:

    Everything crossed for you Jess. I hope the answers and the treatment you need are just around the corner. I marvel at your bravery with every post you write. You truly are an inspiration with your positive outlook on life, even when you’re frightened or angry. You only ever voice the positive side of your journey. Thinking of you 😘

    Liked by 1 person

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