I learn new things every week with this whole Sjogren's thing. A few weeks ago, I was convinced my spleen was enlarged and so when the pain was pretty bad with my pain meds, I moved up my Rheumatologist appointment one day (they had a cancellation- i got lucky!). The pain wasn't too horrible when I arrived or during the appointment, but when I explained that it wasn't gas or chest pain, he began to poke around. It hurts here and not here, right? um yea. and here, but not here, right? um, yea, that's weird, I swear, it was like under my rib cage, but it feels like my chest cavity hurts. So, of course I don't remember the name for it, but I officially have inflammation in my chest. Yea, wherever there are joints, I'll have pain. And if it can hurt like almost a 7 on the pain scale AFTER a pain medicine, I'm afraid what it'll feel like some day unmedicated. But, I wasn't really that embarrassed to tell my Rheumatologist that my spleen is enlarged. He understands my need to research my symptoms, educate me on sjogren's, and even allow me to start and stop medications when I feel I need to (that was another part of the visit- i started back on methotrexate and then informed him during the visit and asked for refills).
But here is where last weekend Sjogrens took over my life for a second. I mean, my life is chaotic anyway. I play many roles and coordinate many schedules. That's what Pastors do. That's what parents do. Coaching tee ball has taken over my life for almost three months. And so when another parent was willing to plan our end of the season party, I was so grateful. I had researched a few trophy places, but hadn't ordered them yet. Last week, I realized the party would be on Sunday and that meant I should have had trophies ordered weeks ago. I had been waiting on parents for some help with 'superlatives' so we could engrave them on the trophies, but then realized I couldn't wait any more. After visiting two different shops in person last Tuesday, I returned to my favorite on Wednesday and met the owner. He had coached little league for 28 years and was so friendly, helpful, and even willing to get the trophies done in two days so we could have them for our party that weekend.
So Friday, I picked them up. Nope. That's not how my brain works anymore. Instead, I spent the morning getting the antibiotics and steroids to take care of the chest cold my immune system can't get rid of because I've taken too much methotrexate lately. Instead, I remembered to bring tape to the booth where I had promised to volunteer a few months ago. I spent a mere two hours sitting in while the all day volunteers had lunch. Instead, our family did end up in the Johnson City Press at the Blue Plum Festival! And when we returned home, I finally figured out why I felt that nagging feeling all day long. That piece in my brain that was there, but I couldn't grasp it. It's like when there are words that I can't find. Or when names are lost. But somehow I remember numbers and street addresses. I can probably stalk someone quite well. But at 6:30pm Friday evening, I realized I had forgotten to pick up the trophies for our tee ball party. I called the shop and let it ring about 20 times till their machine picked up and left a joyful message, hey, if you are there on Saturday...
Our last tee ball game was Saturday morning and so I decided one last time, to ask about our numbers. We expected a good turnout and so I confided in a trusting parent (the superstar that planned the party). As I began to tear up, she said, do you have the number... and the phone number rolled off my lips...282... like, how the hell can I remember a freakin phone number, but forget to pick up a box of trophies that I ordered two days prior with a bunch of hoopla surrounding it?
I walked to the car defeated, like this was the part of being the coach that I was so excited about from the beginning. My memory/brain fog, my sjogrens brain continues to lose 'function'. I feel as if I should identify as a 70 year old...this is a part of sjogrens that is so difficult to prove, but that on all patient support sites identify as a primary symptom. But it isn't who I am. I do not live in brain fog all the time. My eyes are not bone dry all the time. My mouth is always dry. My joints hurt all the time, but not horribly all the time.
Maybe someday, I'll be able to say I have Sjogrens. Sometimes I can forget very important details and I apologize for that. I'd love to volunteer or lead this, but could someone help remind me?
And as far as the trophies go. I went with the right trophy place. Choosing a place where the owner is also a little league coach pays off when you need to get your trophies on a Saturday evening. It also pays to trust others and let them help you when you've forgotten something or messed up. I don't think she realizes how much of a sjogren's hero she became for me last weekend, but it's why I share with you all. Thank you to others who have been heros for those of us with autoimmune disorders and other invisible illnesses.
"Healing may not be so much about getting better, as about letting go of everything that isn't you--all of the expectations, all of the beliefs--and becoming who you are."---Rachel Naomi Remen
