Thursday, October 15, 2020

Letter to my future self

Dear Future Self,

Is it okay that I start this letter by saying that I'm afraid to think about how you might be doing? I want to be kind and optimistic, but based on our history together, I'm scared for the condition that you might be in right now.

My mind is going all over the place, wondering what you're able to do,  Are you confined to a wheelchair or bedbound? I certainly hope not. Do your hands still work properly? Are you unhappy that I made the decision to have our right wrist fused to relieve some pain? I hope that hasn't caused you too much difficulty. It was an irreversible surgery and so drastic that I have been very afraid of regret. Everything that I have done has been for you, my future self.

How I hope that over the years, we have made progress with psoriatic disease. Wouldn't it be wonderful if joint damage could be reversed? What if there was a cure for this disease? Have you seen this? There are tears in my eyes just thinking about the possibility of a cure. 

If nothing else is possible, I hope that you're able to hold your grandchildren. I hope that this is comfortable and a place where you want to stay. I hope that you've been able to see hope for Nora's disease progression and know that she'll be okay and won't have the same struggles that we did.  When her children are born, I hope they never even hear the word psoriasis. I hope there is no need, except as a distant memory of a life that we once knew.

Dear self, I hope you've found peace with your life and your disease. You struggled so much when you were younger. The embarrassment of this disease can be overwhelming, but as you've aged, I hope that you no longer feel like a burden, or no longer feel ashamed if your skin makes people uncomfortable.

I hope you grow to be old and wise and have less pain than today.



The idea of my future feels extremely overwhelming. I never thought that I'd make it as long as I have. I honestly believed that the chronic pain would have done me in years ago. But here I am!

Every day, I hope for a cure. I am not confident that I'll see it in my lifetime, but I think that Nora will. The best gift I could receive is the knowledge that her children would be born without any worries of psoriatic disease.

What would you say to your future self?

Wednesday, October 14, 2020

Letter to my younger self

Dear 20-year-old self,

You don't know this yet, but your time to do all the things that you might ever want to do is very limited. Go do them now!

One day, you'll wish you had taken this time to explore the world. Go out and travel! I know that money is tight. Be more responsible with it. Make better decisions so that you can go on amazing trips. Don't settle for Myrtle Beach when Paris is waiting for you. Would you rather go out and spend your money on food and drinks on the weekend or save it and go ziplining in Costa Rica? Just stop wasting your money on stupid stuff that you'll never remember the way that you would remember a tour of Istanbul.

You'll tell me that you don't have anyone to travel with. Go anyway! You're so outgoing that you'll make friends. Find a tour group. Just go. You're going to have plenty of time to sit around and wish you had done  more. Just go have fun. If you go out on your own, you won't have to worry about someone else's timetable. You'll be able to do whatever you want, when you want. Nobody will judge you. They will be envious that you had the courage to do it and wish that they were able to.

Julie, don't be so scared. Your life is going to change in ways that you can't even begin to imagine. Take these next three years and find excitement and joy. Step outside of your comfort zone. Challenge yourself to do things that scare you. 

When you start feeling those first pains of arthritis, please know that your life isn't over. The pain will be hard to get through, but you'll still have a really good life and you'll create happy memories.

Always remember to take advantage of your good days and have as much fun as you can.


What would you say to your younger self?

Psoriasis and Tattoos

Before I got my first tattoo, I went online, frantically looking for someone to tell me that it was okay for me to go okay - I would be fine...