Even with Lupus, the world is still your oyster.

[HODL]

Hello all you beautiful people I'm new here and would like to share a little story.

I'm a male with SLE, and lots of other conditions. So many that when I walk into a room to see a new consultant, we usually end up laughing about the fact my conditions take up a single page of a letter.

Although I can laugh at my it all now, there was a time where laughing at it seemed impossible and I questioned why I had all this going on, and if I could carry on with it. And I have a story to tell you.

The story starts a few months before I started University when I was 20, I was taken into hospital because I was anaemic, 5 bags of blood were need on the first night alone. The doctors had no clue where the blood was going, it just kept disappearing, after several days of countless blood tests and my veins in my arms closing from them, we got an answer. I was having blood clots in my Kidneys, this was both a god send and a kick in the teeth. A God send because we finally could prove i had sticky blood, and a kick in the teeth because I was having serous kidney failure.

You can guess what a worrying time this was for a 20 year old, not knowing what would happen. So as some time went by, I was set up to have my plasma exchanged.

Even though I had experienced server kidney failure, blood clots, plasma exchange, almost dying, I walked out of those hospital doors 4 weeks later with a smile on my face, my kidneys fully repaired and back to normal. University? You damn well know it, I started the first year in September and carried on and graduated.

The point of this story is, that no-one will know what we go through unless we tell people, and we do not know what is around the corner. Tomorrow is another day, full of new experiences, and new adventures.

If you take things one step at a time, then nothing can hold you back.

Just remember, you go through tougher battles everyday than most people ever face, and for that alone you should hold your head up.

[maggielee]

Wow, welcome to the forum. I was walking on a beach in the rain with a friend of mine today (great when your sun sensitive) who was upset & I was saying something similar - staying in the moment and all & not knowing why we have these challenges, it does seem, it is how we react to our difficulties or challenges, my lifetime learning... Sometimes it is learning about being compassionate, to ourselves too, which I fail to do.

Tomorrow I am heading into work to figure how to start back after being on long term sick - it caused me to reveal to my work colleagues that I have autoimmune problems - lupus, sjorgrens etc. I have been trying to carry on and it caught up with me...so living in the moment and blessed that I can walk in the rain...thanks to see your reminder 😁 ....ML

[Bronagh2015]

Good for you HODL.......a very positive post.

[Wenwen]

Thank you for your wonderful and inspiring story! Wish you well

[Leave-me-alone]

What a wonderful post. When I first discover lupus. I didn't know what to do. How lupus is like a friend you love and hate at the same time. I was in the mid of a life time adventure after fighting with infertility for years. Husband and I moved to Asia six months in I was very ill. Left husband for 4 months. Too scaried to leave my doctor in the uk. My doctor then gave me an emergency pack (in casebod flare up). And send me away now living my adventure with an umbrella in one hand. Is great totally normal here!!!

[Deegraham]

I love your story!

Please see my post entitled 18th birthday. Best wishes, dee