Its not all bad! A message of hope

Welcome New Member Introductions
1

Hi there, Im new!
Diagnosed colitis in 2007, which changed to crohns a few years ago. Had ‘fatty liver’ and high enzymes since I was 19. Im 37 now. Diagnosed PSC in 2012 I think?
Im Canadian but was living in Japan for some of this. I have two biological kids and two more stepkids so far. Im BUSY AF!!
I suffered a LOT… as it seems most of us have.
Agoraphobia, Panic disorder, severe pain, bleeding, anemia, debilitating fatigue, unable to lift my arms above my head or walk farther than half a block without help, urgent bathroom needs 20+ times a day, fainting in the day from low blood pressure, joint pain, malnutrition, weight loss, insomnia, migranes, skin rashes, ulcers in my mouth and eyes, and more!

BUT

I am now a person who climbs actual mountains. I work a job that involves lifting things, I sleep through the night, I experience no pain, I walk as long as I like, I care for my children plus more, I am a healthy weight, I live like someone without these diseases and actually healthier than a lot of people I know who dont have these diseases! Agoraphobia and panic are not a daily problem now, I have no fatigue!

When I was first diagnosed, I looked here. and I was scared. because the outlook seemed grim. But I proimised myself that if I got better I would come back and give hope to others who were looking for it.
I got better!
Im still living with Crohns and PSC, and I am living very well. BETTER than before I was diagnosed, by far. So now instead of just forgetting about sickness and living my life, Im coming back to try and offer some hope to people who need it like I did.

Its NOT all bad. you have options. And there are many things you will learn from this journey that others will never get the chance to learn.

When it comes to being as well as possible, my advice is this:
-Laugh and love more than you think you should
-Eat cooked foods and take vitamins
-Avoid processed or fried things
-Try EVERYTHING until you find your answers
-CBD oil and/or weed
-sleeeeeeep
-if something causes you discomfort, complain! loudly! get the help you need
-plan to live and plan to die
-go outside. even if its just 10 minutes a day in the morning
-find your new normal, and thrive in it

and most of all, remember that if I came here to say this, many other people are not here and not saying it, living good lives. there is good in your future. Enjoy your one and only life, with PSC or whatever you have to go through.

HUGS

2 Likes
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Love the lessons, Leslie. In dealing with any major disease, I think people try to balance reality-how bad their symptoms are, with living their life as best they can. And finding that balance is so different for each of us. Glad you found yours.

While there are quite a few members here who deal with psc and either uc or Chrons, dealing with three would be very challenging.

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Loving your message, Leslie! Keep on shinning!

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Through the good and bad days it’s always important to have a positive attitude.

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Robyn, you’re right. Having the right mindset is an immense ally. One mantra I used was that there will be bad days, but having them helps you appreciate the good days.