Friday, October 18, 2019

Lessons Learned

It's been 16 years since my diagnosis.


Seems like it happened yesterday, but at the same time, I feel as though it's been a major part of  my whole life as well. Y'all know what I mean. I feel as though I have no surprises left for me in this old autoimmune disease riddled body, and yet......I feel strangely as though I understand absolutely nothing about Sjogren's syndrome.

On days that I feel optimistic, when this paradox occurs to me, I simply throw up my hands and laugh. And think something along the lines of  Ah well, it is stuff like this that keeps life interesting.

Then on days like today when I'm struggling with chronic decade-long issues, I throw up my hands and think something far less cheery. You can insert your own feelings here since I know that y'all deal with the same things.

It is on days like today that I can appreciate the value of those sixteen years behind me in managing this illness. Today, my energy is low, my joints are painful, and I'm teetering on the edge of a POOR ME episode. Disgusting.

But based on my experiences over the last sixteen years, today I am able to step back from the abyss of self pity because I have been here before. Which is both unfortunate as well as a good thing. I've had more days like today than I care to count, but I have also had innumerable episodes during which I have realized that these experiences don't last forever. That I can come out on the other side of gloom, doom, and discomfort and survive. To not only survive, but to thrive in my own way.

One doesn't come by those types of realizations without years of experiencing these rather crummy situations. Makes me wish that current me could have made a time travel visit to newly diagnosed me brimming with tips tricks and encouragement.


Newly diagnosed me would probably have looked at current me with skepticism and disbelief. I would have loftily informed current me that I was not going to let this disease limit any aspect of my life and that surely in 16 long years science would cure autoimmune disease, for cryin' out loud.

Yeah. Bratty Inner Child Julia has been around since I was born, I suspect.

So I suppose it's actually been necessary for me to slog through all these years; to experience it all.


But here I am. And it's going to be OK. I mean, if I didn't have a disease that occasionally anchors my butt to my recliner I sincerely doubt that THIS EPIC EVENT COULD HAVE HAPPENED:

Did you KNOW THAT OCTOBER IS GODZILLA MONTH  on the Turner Classic Movies channel? 

Which forced -- yes, forced -- me to drag Terese and Greg and John to our living room last Friday to celebrate. Because Godzilla is awesome. And because they knew I just didn't have the energy to go out carousing that night.

And also forced John and Greg to wear GODZILLA hats while sitting through not one but TWO Godzilla goodness-filled movies.

I mean, I can thank Sjogren's for that fun filled evening.

Lesson learned.

1 comment:

annie said...

Julia, I feel your pain and I sympathize with you. Although everyone's pain and situation is very unique and individual, we go through similar ebbs and flows with our illness. I'm in my 10th year of my diagnosis (already?), and sometimes it feels like I'm just starting, at others it's same old , same old and we deal.

If you can't have a sense of humor about this, then all you do is cry and fall into depression, which is not your choice, nor is it mine. I'm also a stoic, I accept what I have, there are days where I rant, cry to myself "WHY",and then continue on with my life, particularly after a hospital visit and see so many patients who will not make it home because they are so sick. So I guess I'm grateful I have nothing worse. Keep enjoying Godzilla, life is too short!