The pain in my head, the pressure especially is worse right now. Brain fog is preventing me from understanding what is going on in the program. Thankfully, Mom arrives with my scrambled eggs, gluten free English muffin, grapes, mint tea. She knows my stomach is not the greatest, but I am hungry! She sits with me for a few minutes while we eat. We talk a little but my mind isn’t thinking so clearly. That weird feeling in my head is worse. As Mom heads back upstairs with my tray I ask her for some sparkling water for my stomach.
The blinding pain hits me like a white-hot knife cutting through my head. It is a searing series of jolts, like I am being electrocuted multiple times. Mercifully, an inky blackness spreads over me and everything goes dark.
Even though I’m pretty sure I’m still on the recliner I am only vaguely aware of choking on the foam that has risen in my throat during the seizure. I can feel Mom trying to wipe my mouth with a tissue. She lets me tug it from her hand to clear my mouth better. It hurts incredibly to move, but I need to get to bed. The pressure is worse in my head now.
The weird sensation is rising from my stomach into my head. Have to tell Mom, but my vocal cords are frozen. I’m blind as well from the first seizure. Even my hearing is gone. All I can do is make motions with my hands, but Mom understands enough to lower the recliner, ease me forward, then slowly get me to my feet. It’s a struggle to do any of it but will my body to stand. Oh, how I wish my legs would cooperate! They are weak, trembly, unsteady. Can’t blame them, they have very little feeling left from mid-thigh down. Mom slides my arms around her shoulders, then leads me to my bed – Slowly, Mom, legs are protesting, my mind tries to shout. After what seems like forever we reach my bed. Mom helps guide my hands to the edge, helping me find the blessed pillows. It’s so hard to lift my legs, but finally I’m safe on the mattress, before another seizure hits.
I have no idea how long I’ve been lying in bed when my consciousness returns. Without vision, hearing or speech it is impossible to know anything safe for the new levels of pain that run from my head to my upper thighs. Everything is achingly tender. I flinch when Mom gently strokes my ear. She pulls her hand away not knowing how to comfort me. While attempting to sign to her I discover the blood pressure cuff is still on my arm – It hurts! Must have whimpered because Mom quickly got it off. I sign again to the open air, hoping Mom will understand. She gives me her hand so I can spell out short words. She squeezes my hand once – Yes! She understands my request! (We worked out a system to communicate when all of my other senses flee after a seizure. Squeeze once for Yes, squeeze twice for No. And when my confusion clears enough we spell into each other’s hand to ask or answer questions.)
After giving me a drink to clear my throat, Mom lets me rest – I truly need rest to recover. My body won’t cooperate, needing a trip to the bathroom. After locating the wall by my bed, I begin to knock. I don’t know how loud it is, but Mom is quickly by my bed. She holds my hand to let me know, but I flinch again from the pain. That hand is swollen a bit as well. Mom waits for me to sign, which is easy this time. She gently guides me to and from my destination; helping me as best she can. Finally back in bed, she signs into my left hand to rest. Wish my hearing would release – I need to listen to my ocean CD. It is so relaxing.
After lying in my bed a few minutes, aching from the seizures, my hearing suddenly returns. Silent tears slide down my face unbidden, but I can’t help it. Every time my senses begin to return, there is relief, joy, thankfulness. Knocking on the wall again, Mom returns, but I can hear her softly speaking, praying for me. When I respond she is also relieved that my hearing returned. She immediately turns on my ocean waves CD. She whispers she loves me, then allows me to drift fitfully to sleep.
Several hours later I awake, realizing immediately that my vision is returning. It isn’t the greatest, but I have color and can distinguish objects. My legs are a little less wobbly so I can get my own water. Eventually I can get out of bed, go up to the kitchen to see my mom. She is surprised that I’ve negotiated the steps on my own, giving me a smile and a gentle hug. My body feels I have been in the fight of my life, tender, aching, sore, but my head pressure is improved some. The weird sensation is almost gone. Mom notices one of my eyelids is drooping, but it’s hard to miss. She just smiles, then asks me if I’m hungry. Since my voice hasn’t returned I sign in a little while. After I get a glass of mint tea, Mom helps me back down to the family room. My vision still isn’t the greatest but I can watch Duck Dynasty! The show makes me laugh which I desperately need until supper.
My stomach isn’t doing the best right now; ate something with gluten a couple of days previous, so I’m paying for it. Mom has given me several choices for supper, but nothing sounds good. My dad had just finished eating, giving me a soft kiss on the forehead. He has to go to a meeting at church, so he can’t linger but a few minutes. How I miss our dates we had while growing up! It’s been a long time since we’ve been able to have dinner and a movie night. I smile at my dad, trying not to let him see my pain. The Gardasil injury has been very hard on both my parents. Not an easy thing to live with, but this is my life now.
Mom finally makes me quinoa with chicken and organic veggies – it tastes good so digesting will be easy, I hope. After watching a movie with mom I decide to take a shower. Couldn’t get my IV today, but I’m very determined to go tomorrow! Mom isn’t crazy about the idea, but lets me know she will be close by. I am thankful that I can do this much finally, but knowing she’s close if I need help is reassuring. After my second dose of Gardasil, Mom had to bathe me, feed me, help me in and out of my wheelchair. Six years later I’m doing some things on my own again!
During my shower I begin to overheat. Reducing the water temperature isn’t helping. My head and stomach are way too hot now, so I quickly shut off the water, open the door while trying to call for mom. Even with the door wide open, my towel is too hot as well. As the waves of nausea strike, I grab my trash can. Mom arrives as I lose my super. My body really seems to hate me, though my voice has unexpectedly returned! At least something positive has just happened! Wobbly legs and trembling arms prevent me from drying off quickly. With Mom’s help though, I’m partly dressed by the time I hit my bed. My face is on fire from the flaming nerve endings that bloom on my body randomly. The nausea is pretty bad, but mom fans me best she can. Finally, after what seems an eternity, the flame in my face and stomach fades. I’m still trembling from the exertion but at least I’m not tossing my cookies. Mom gets me something for my stomach, Bromelain – best thing I’ve ever tried for nausea! It settles my stomach to the point I can finish getting ready for bed. Thank you, Lord, for getting me through one more day. Tonight, hopefully I will sleep. Tomorrow will be a better day…
Brittney and Roxie Fiste
To read more about Brittney’s Gardasil injury: One Less After Gardasil.
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