RARE DISEASE BURNOUT

It's been 10 months since I posted anything. Why? It's actually really simple. I woke up one morning and the urge to write was gone.

OVERNIGHT I didn't want to share my life with CS anymore .
I didn't want to be different with all my ailments and tests and surgeries and nonsense AND
I especially didn't want to talk about my daughter Ashton any more. It was too painful.
Enough was enough. I had rare disease burnout.

I suppose in retrospect, I felt that if I went quiet the condition would too. Let's just say it didn't go anywhere.

Time is a great healer of emotions and not surprisingly that's why this blog is back. You see we're not done. We'll never be done. We have a role to play with advocating for this medical condition and we take that role seriously.

You notice I say WE. Yes, from now on this blog will be a joint effort and I will let my daughter tell her own story. There may be overlap. I am after all a parent of a child with a rare condition. I happen to have the same condition. 1 in 200 000 and we have 2 in this family of 4. Still does my head in.

So since we met:
-While actively trying to pretend I didn't have a medical condition, my mother was diagnosed with cancer. She is a private person so I will not discuss her condition. The only thing I want to say is that her primary cancer was in the bowel and this has made me question her negative CS diagnosis again. But it is really pointless to pursue this now. The months have been filled with being a daughter and helping my mother through this in any way I can. I won't lie. It's been hard.

- The aftermath of the gastric sleeve surgery from hell is an unwanted gift that keeps on giving. Despite another procedure to dilate ( open up) my stomach opening, eating is no longer a pleasure and causes me no end of grief. But...we will leave this for another blog post one day.

- things keep growing on me. Remember, a person with CS has a tendency to do this. At time of writing an odd shaped cystic lesion is growing on my stomach wall. I'm sure its benign but I'm off to the plastic surgeon next week to make sure. It's ugly and very annoying but unfortunately it's not alone. My arms are unsightly with scarring from previous lumps and more are about to join them as new lumps have emerged. These are usually lipoma ( harmless) and they are removed when there is a good reason. My good reason for this one is IT HURTS. My plastic surgeon is great. He takes them off when I've had enough.

- I'm meeting a new specialist in two months who supposedly can manage my condition for me. After managing myself for years I'm slightly cynical. This is gonna be good.

Till next time
ST