It was quiet when my eyes were closed. It was when I could be at peace despite my world falling to pieces. I could be in the middle of a crowded room, or in busy store, or even now, as I lay on this cold bed in the middle of the local emergency room… With my eyes closed, I could shut the ugliness of the world out, maybe even pretend I was well again.
Not even a week had passed of 2018, and here I was with an IV in my arm, my mom sleeping next to me in a cold hospital chair. As per usual, no one had any idea what was wrong with me. A fate I had grown accustomed to. Leaving five hours later with a prescription for painkillers I’d never fill, and a suggestion to “get some rest”.
My problem is I can never get enough rest. Not if I want to attempt to have a life by any standards. I can’t sleep my life away afterall.
So in that hospital bed I lay with my eyes closed, waiting for no news. And in that quietness I fell asleep, mulling over a dream. A dream I’ve had many times. One that I know now will unlikely come true. Not so much a dream, but more of a memory…
The last memory of my other life.
The life I had before this was all I knew.
A life that wasn’t filled with medications, cold hospital rooms, and the constant threat of more pain, more fatigue, and a new diagnosis every six months.
Furthermore, a life where I would find someone who loved me for me. Where they wouldn’t look at me and see broken. Where they would marry me no matter how many years we may have together. A life with choices, and maybe children.
It was a good dream. But eventually I woke up and opened my eyes… Back to the cold hospital bed, to the doctor telling me she could do no more. Back to my reality.
I slept for a long while that day, once I had climbed back into my own bed, and my mom departed for the long trip home. I was used to this aftermath of hospital visits. Used to the bed rest, dehydration, and exhaustion that inevitably followed. Used to the loneliness, the unbearable loneliness that came with my disease.
But this time something new followed, I was not so alone. He came with food, and hugs, and the support I needed to get through it without falling apart. And in the days that followed, I realised his love allowed me to mull over a new dream.
When we were sick as children there was always that one person who could make us feel better. Or at least help us get through our qualms faster. It could have been a favorite aunt, a grandparent, or an older sibling, but for me as an only child, it was my mom. And when I was really sick (with a bad cold, or the flu, or maybe belly aches,) she became ‘Mommy’, and Mommy could do no wrong. She anticipated when I needed hot tea, another warm blanket, help to the bathroom, or sometimes just a hug and a channel change (our first cable box in the 80s didn’t have a remote). When we were young these relatives that helped us were more like superheroes, they could do no wrong, and they cured our ailments with a well timed cup of hot chocolate.
I miss those days. The days of waking up and only needing to holler down the hallway for help, and in flies Super Mom to the rescue. But those days are long gone.
I didn’t even have to open my eyes this morning to know it was a bad day. Every inch of my body was silently screaming. The trek to the bathroom was child’s play compared to the excruciating job of getting up off the toilet once finished. My knees said no. My hands and wrists said no. My arms and shoulders, feeling like broken bones flopping around inside my skin, said no. If only Mommy had been there to help. To soothe me with soft words and French toast.
Everything hurts. My hands are the size of baseballs, my fingers won’t bend. Crying does nothing to help soothe except bring my confused cats into the room with pleading meows to feed them more. Oh the joys of motherhood.
I want some hot tea. I want to watch Cartoon Express on USA. I want hot oatmeal and another blanket. But no one comes when I holler down these halls. The pain stays.
Gone are the days where our knights in shining armor are here to make us well. Gone are the days of walking into a kitchen to a ready made breakfast. Gone are the days that a hug makes all the difference.
Gone are the days of Mommy making it feel better. I hurt all over. And no one is here to fix me.
If you would like to help me, please visit my donation campaign at Christine Lilley’s Life Fund
I am blessed by the kindness of others.
I am blessed by my best friend Dustin, who selflessly bought me an airline ticket to come visit him because I couldn’t afford to attend his wedding.
I am blessed by my friend Bergy, who contacts me daily to see how I am, or if I need anything, and whom spends time with me every weekend and makes sure she gets me out of the house.
I am blessed by my surrogate aunt, Janey, whom even after many years of not living in California, still makes time to see me when I’m in town, and keeps in contact with me often to make sure I am doing well.
I am blessed by my dear friend Catherine, who’s infinite wisdom and love never leaves me, but protects me like a nice warm blanket of support and kindness.
I am blessed by my new friend Lester, whom upon reading my blog and having it speak to him treated my mom and I to a wonderfully decadent meal as a way of showing support.
I am blessed by the people who’ve donated to my cause out of the kindness of their hearts.
I am blessed by my cats whom show me never-ending love and kindness that cannot be equaled anywhere or by anything.
I am blessed by my mother who never makes an excuse when it comes to my health, and sits with me during doctors appointments and infusions.
I am blessed by the people who show me support, love, kindness.
I am blessed.
Please visit my campaign page if you would to show your support by helping me pay rent on my donation-paid apartment…
One of the worst parts of being sick sometimes is knowing whether or not I’m having an emergency. Because I have such a high pain tolerance now due to my Rheumatoid Disease, it’s hard to judge if my pain is on an emergency level or if I should just suck it up. Years ago, I had to be in a lot of pain to go to the ER because it meant I was going to get a huge hospital bill. Having insurance through the state gives me leniency in that department but I still don’t want to go if it’s a waste of time.
A couple of months ago I was having bad abdominal pain and decided it was an emergency. While the reason I went in did not pan out to more than just pain due to my disease, one of the many scans they gave me was how we found the cancer. And today my PCP joked about how every time we go to the ER we find a new diagnosis. That’s an unfortunate reality to be sure.
So is my strange back pain right now cause for a trip down the road? My PCP would want me to do a checklist to see what’s definitive.
Shortness of breath?
Sharp pain in abdomen or side?
Nausea or vomiting?
The list goes on.
So… am I having an emergency? Not sure… And even Hypochondriacs Are Us aka WebMD isn’t very helpful today. It hurts, I know that. But does it hurt more than my RA? Can I wince my way through it? Not sure…
I just hate to go in there and waste time if there are people there with legit emergencies. Like car accidents, broken bones, heart attacks.
I guess it’s a waiting game. My favorite type of game… ugh.