This is not a “pity blog”.
I’m not looking for calls or messages.
I don’t want any cards or shout-outs about how “it could be worse” or “I’ve got this” because right about now, I don’t really agree. I don’t “have this” and it’s truly all relative.
Oh, and by the way…I hate Google.
Sorry, for those of you who think Google is the greatest invention ever created. I hate it. Despise it. In fact, I think Google is what makes “semi-normal” women like me turn into fucking neurotic, psychopathic nut-jobs. Maybe it’s because last Friday, when I got this completely insane diagnosis, the very first thing out of the doctor’s mouth was, “DO NOT Google it. Please, wait to see the specialist on Friday.”
I mean, that’s like saying, “OMG, don’t turn around!” when someone walks into a restaurant, you know? Or screaming, “Don’t look!” and you expect a person not to look! What in the actual fuck? Did she expect me not to Google, “Ankylosing Spondylitis” when she said it? I mean, have you ever heard of Ankylosing Spondylitis?
And if you are saying “Yes” right now, you’re fucking lying.
Because I am basically a doctor (I play one on TV) and I have never heard of Ankylosing Spondylitis! So, please give me an effing break. I heard the words come out of her mouth, “Well, Jennifer, the bloodwork came back with a marker for HLA-B27 which is Ankylosing Spondylitis,” now, you tell me what you would do? Sit there and wait like a loser? No. I literally opened my laptop and Googled the shit out of the dang thing until I knew more than she did.
To be perfectly honest, her voice began to fade and all I could really hear was the sound of my fingers tapping on the keyboard. Click, click… click, click. A… anky…ankylosing what the fuck. How the fuck do you spell this shit? Anklyosin…click click… spinal OH! It comes right up!
Jesus. Fucking. What? Omg. I started to hear her again as she explained that I’d need to see the Rheumatologist on Friday. Oh, tomorrow. 8 am. She wasn’t screwing around, huh? I hung up. Called my sister, my mom. Jim. Mark. I kept reading. Genetic? My spine, inflammation of my eyeballs. An autoimmune disease. I was going to puke. My stomach issues, all that bullshit last summer with that “tumor” that wasn’t even a tumor. My lower back pain…my toenails? Omg. My migraines, too.
Jim was calm. Of course. He told me to wait until I heard what the doctor had to say at the appointment. My sister was calm. She made me laugh; told me to wait until I saw the doctor. Mark, calm…yup. My mom, not so calm. Ha. She’s my mom. Told me to be retested and get a second opinion. And that “Ankylosing Spondylitis” was the stupidest name for a disease she’s ever heard in her lifetime. We were cracking up…
Until we weren’t.
We were laughing until we realized that AS isn’t really all that funny.
I got back from my 45-minute appointment last Friday and realized I have to have IV infusions every 6 weeks to slow down my immune system from mistakenly attacking healthy joint cells. My immune system is like totally overactive and produces excess amounts of a protein called TNF-alpha. Ugh. So, this is my new life now. My immune system is eating my good cells and causes all kinds of inflammation (fake stomach tumor) and swelling all over my body. Including my stupid eyes. Yes, my Uveitis that no eye doctor in this city could even diagnose except the AMAZING Dr. Mills with Providence Eye and Laser Specialists is also a symptom of this fantastic disease that is now taking up space in my body.
Am I complaining? Yes. But this is new and soon, I’ll stop. Maybe. I am scared and worried. My life has to change dramatically, ok? Drastically. I have to stop eating yummy shit that I love. Like bread. I love bread. No more gluten. Ugh. And I have to take it easy on the wine and alcohol which isn’t a big deal. But no coffee? OMG, are you kidding me? Yikes. And I have to start upping my yoga game. Yuppers. Pilates, yoga…anything that allows my body to keep on bending. I am so bendy! I’m like the bendiest. So weird really because I’m a dancer for the love of Gd. A dancer! I’ve danced for my entire lifetime. How do I have a disease that attacks the spinal cord and causes the joints to stiffen and weaken?
I had to have 20 different x-rays of my back, neck, and hips. The doctor measured my mobility and spine. I turned my neck, opened and closed my mouth. I have a big mouth. Ha. I can place the palms of my hands on the floor when I bend forward, can you? This just can’t be right.
How is this possible?
My new doctor says it’s like putting out a fire from the outside in. Hmmm. Like if a house was on fire and you just put out the flames on the outside walls, but let the inside keep burning, then walked away. The house would just continue to burn, and eventually burn to the ground. Same as my body, I guess. So, that’s why treating my eyes with steroid drops and my IBS with diet…and doing yoga or just taking NSAIDS for the pain in my lower back and knees, won’t stop the AS from getting worse. I have to have the IV infusions, for the rest of my life.
Every six weeks, or injections in my stomach every two weeks.
Am I happy? No.
Is this terminal? Fuck no.
Will I be “ok” and keep on going? Hell yes.
But I am allowed to be scared and nervous. I’m entitled to feel annoyed and angry that this is happening to me. And I am definitely going to be looking for some “Infusion Buddies” to come hang out with me every six weeks when I go for my treatments. Two hours is a long fucking time to sit in one of those chairs with an IV drip in your arm. And no, the boys don’t know yet. It’s not their problem or issue to worry about right now. They have to be kids and I have to be the grown-up.
But, if you have a few minutes to do me a solid, I’d appreciate it if you’d send some good juju our way. Oh, and then have a big piece of chocolate fucking cake for me…with a side of Milk Bread from Kindred. Dammit, I love that damn Milk Bread. If you don’t know what or where Kindred is, go on and Google it. I’ll allow it just this once. 😉