Good morning! I’ve decided to use my blog not only to writing, music, and other facets of entertainment, but, also to share my journey. I’ve had significant health problems for almost three years. Initially, a rheumatologist diagnosed me with systemic lupus (SLE) on June 19, 2013. However, the medication wasn’t working and I kept getting worse and developing new symptoms. So, after second, third, and fourth opinions, my neurologist believes instead I have fibromyalgia.
In April 2014 I visited yet another rheumatologist who I hoped would be familiar with autoimmune disorders. Following an extensive intake during my initial appointment, I found a place where the doctor also listened to me. Based upon my blood work, the doctor believes I have Sjogren’s Syndrome. She also made the diagnosis of Fibromyalgia and pre-lupus. I’ve never heard of pre-lupus, but, hopefully it stays in the “pre” category.
Thank you for listening, each week I will have a new installment chronicling my journey- Which is now more frustrating than ever. I test positive for ANAs in my blood, but, the lupus tests are negative. There are several varieties of autoimmune disorders, with different caveats and health variations. Learning to live with the unknown has become my routine. With worsening symptoms, I consulted an amazing oncologist, Dr. Gerardo Trillo at Texas Oncology.
DON’T PUT ME IN CHARGE OF MONEY
Yesterday was the annual volleyball Pink Out for breast cancer awareness and fundraiser. It’s a big deal, lots of fun, and we enjoy raising money to fight such a heartbreaking illness. I was in charge of concession duty for half a shift. I knew this for a few weeks, no big deal. My daughter game was at 5:30, and I truly believed one hour would get me there.
Feckin’ Dallas Metro traffic.
Then, get in my residential area, to find a MAJOR intersection that’s been under road construction for a freakin’ year, also had a light out. It was flashing red like a 4-way stop. Yep, traffic backed up for literally miles in ALL directions. My friend was messaging me that my daughter was looking for me. Where was I? The game started…I felt like such a loser mom. Thank you Morgan for the updates. I do appreciate it. #village!
Needless to say I didn’t get to the game until 6:15.
I still had to stop by my house (on the way) pick up The Husband, and the gift basket I donated to the silent auction. Anyone who is running late and held captive in traffic understands the full on feeling of helplessness, claustrophobia, and road rage. I was cussing right and left in my car, with the windows up. No one needed to hear my rant, they felt the same way I did.
I saw my daughter play for about 5 minutes. They won the game. YAY! I tried not to let on I didn’t see much.
So, rush to the concession stand for my shift. Thankfully, The Husband offered to help, great guy. We also had a couple other helpers, so, wouldn’t be bad. Right?
Ummm, until I had to start adding and making change.
Yeah, that’s what this M.Ed. graduate just said. I graduated with a 3.6 GPA, I’m not a rocket scientist, but, I can hold my own in dinner conversation.
The first slam occurred when a lady ordered 3.50 worth of snacks and gave me a 50 dollar bill.
My brain turned off.
I initially gave her 41.50 in change.
I look to The Husband, HELP.
We figured it out. That wasn’t the first one of the night. My brain fog graduated from remembering a grocery list to full blown blank slate. The reverse Tabla Rosa…things I don’t want to unlearn.
I even spelled a few easy words incorrectly yesterday.
#Sjogrens Syndrome sucks. Autoimmune diseases suck.
Was it the stress of running like a chicken with my head cut off? I don’t know. Strange that I suddenly couldn’t handle money, and, today, I’ve bordered on a migraine that’s gonna hit me tonight like a freight train. The tinnitus is on high volume today. I see a visit to my neurologist in the future. And, a Sjogrens specialist here in Dallas.
I went to yoga today. Yes, that helped. Thank goodness for Christina and her wonderful class.
Forward march…it’s all we can do.