A little while ago Julia, over at Reasonably Well, asked the question...
"If your present sjoggie self had an opportunity to go back to the first few months after your diagnosis -- like our anonymous commenter is -- what would you tell yourself, knowing what you know now about this disease?"
So I decided to sit down and write myself a letter. Here is what I came up with (albeit, slightly edited)...
My letter to myself would go something like this...
Dear Sjoggie Mama,
Pack your bags babe your about to begin a journey. You still have some completely normal no-Sjogren’s-to-see-here-days. Not gonna lie, though, some of it is just going to plain suck worse than a rainy day on vacation. But. But, before you start the mini pity party (Which it IS okay to do for yourself every once in a while) just know that you will learn more about yourself in the next few years than you have before you were diagnosed. You are strong enough to handle Sjogren’s Syndrome. No, scratch that. “Handle” is too tame a word. More appropriate phrasing would be that you take everything Sjogren’s throws at you, deal with it in your own fabulous way, and yell back “I’m not letting you beat me!”.
Until then remember a few things…
Life doesn’t have to be perfect. (And yes, you’re still working on that one.) Life is messy enough on a normal day for a normal person. Throw in a chronic illness and you’ve got a recipe for an interesting ride. Sometimes instead of being the perfect mom and wife you’ll just have to be happy that the baby was fed and that you have the ability to call out for pizza.
Learn what your limits are and stick to them. If you know that you only have so much energy when you wake up in the morning don’t try and be super mom and do that one extra thing. You’ll end up regretting it. Maybe not as much as that haircut you gave yourself in high school. But you will find yourself laying on the couch, a friends chair, a dressing room floor, you get the picture. And then you’ll regret it.
And if you do push yourself and do that extra stuff that I just warned you about, give yourself a break. You’re still learning. About Sjogren’s, about being a mom and wife, about life. Don’t beat yourself up because you don’t have the energy to sit on the floor with your girly. Just find a way around it. Become a person who thinks outside the box. You’ll be surprised about the amazing memories you end up making just that way.
Don’t forget to reach out to the friends you make online (Through your blog. ((Yes, you have one. Don’t wait another second to start it. It’s so cathartic to get everything down in writing.)) And, also friends you’ve met through other blogs, and social media.). Sounds crazy, I know, since you haven’t met a single one of them in person. But they are a wealth of information and their hearts are so beautiful and uplifting when you just need someone to listen and understand your pain.
Keep your sense of humor and your faith in God strong. About all of it. Laughter makes things so much easier to deal with.
You’ve got this!