This is not a “pity piece.”
I don’t want any comments about how “it could be worse” or “I’ve got this” because right about now, I don’t agree. I don’t have it, not even close.
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. I think Google is what makes “semi-normal” women like me turn into fucking neurotic, psychopathic nut-jobs. Maybe it’s because when I got this utterly 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, ya know? Or screaming, “Don’t look!” and you expect a person not to look! 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! I listened to the words come out of the phone, “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 patiently? No. I opened my laptop and Googled the shit out of the dang thing until I knew more than she did.
Her voice began to fade, and all I could 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… sponod 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. My boyfriend. My Wasbund. 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? I can’t even remember the last time I saw my unpainted toenails! Do they have “ridges and lines.” Omg. My migraines, too.
My boyfriend 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 — my Wasbund, 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 funny at all.
I went to my 45-minute appointment with the Rheumatologist, and he told me that IV infusions every eight weeks to slow down my immune system from mistakenly attacking healthy joint cells would be the best treatment. My immune system is 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 Charlotte could even diagnose (except the last one I found) 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 in shock. My life has to change dramatically, ok? Drastically. 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? I’m so bendy. Well, to be fair, I am a dancer. I danced for my entire life. The doctor said that is probably why the symptoms came out later than in most women. So, keep moving and bending ladies! This diagnosis just can’t be right.
How is this possible?
My 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 only 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.
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 going to be looking for some “Infusion Buddies” to come hang out with me 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 yes, I’ve told my boys but not that the disease is genetic. I don’t want them to worry; they are teenagers and have enough on their plates.
I do know this; knowledge is power.
It’s been years of feeling like shit — my stomach problems, migraines, eye issues…walking up and down the stairs, all of it. And now, I know the reason. It feels good to have the answers to the puzzle finally. And autoimmune diseases can be difficult to diagnose! Doctors need to look at the entire body as a whole and listen when you’re running down the list of aliments carefully. If my eye doctor didn’t know that the inflammation in my EYEBALL was a direct correlation to something bigger, I never would have gone into that Rheumatologist. Never.
So, here’s why I’m writing this piece. To share my story. If I can help just one person get the correct diagnosis, then I’m happy. Be strong; trust your instincts. Don’t stop until you get the answers you’re looking for and remember you are your own best advocate.