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.
For most patients with serious diseases and illnesses, doctors are our calm in the storm. They are the pillars for which we lean on when our resolves are shaky and our optimism needs a recharge. We put a lot of faith in our doctors, especially if they are specialists, working on our main concerns, looking for a cure.
But what happens when the people we put so much faith in fail us? Who do we turn to when our pillars start to fall?
I have a chronic pain disease, as most people know. Unlike many patients with Rheumatoid Disease, I don’t just rely on 2-3 doctors. Most RA patients usually have a main doctor or PCP (primary care physician), a Rheumatologist, and maybe also a pain management doctor, for those with severe pain.
I have 14 doctors whom I see at least on a monthly basis. I won’t bore you with all the titles, but besides the first three I mentioned I also have an Oncologist, a Pain Therapist, a Podiatrist, and an Infectious Diseases Specialist, just to name a few. They are my team, and the people I rely on the most to keep me healthy and keep me alive.
Over the last year my illness has taken on a life of its own. My disease has become extremely aggressive and has stumped even my primary doctors. No one is quite sure which route to take as my body continually rejects rheumatoid arthritis medications and pain relievers. The danger in this of course is without proper medication I could get even sicker and be consumed by even more pain to the point where I could be wheelchair bound, bed ridden, and the very worse case scenario… die.
It’s been a very intense and scary time. About eight months ago some of my doctors realised the pain meds I was on were just not cutting it and referred me to the next best course of action: an intrathecal pain pump. The pump would effectively be healthier than me chomping a bunch of oral opiates each day to control my pain. It’s surgically implanted in my hip with a catheter that attaches to my spine and directs liquid pain medication directly into my spinal fluid. It’s a much more controlled delivery method, it’s safer, and it’s healthier on my body.
Unfortunately, since I don’t have social security yet, and the access to Medicare that goes with it, I’m on state funded insurance. And a lot of doctors, especially the specialists, do not accept that form of insurance. This puts me between a rock and a hard place. Obviously I need the help, but it’s hard when that help is severely limited.
Where my pain therapist is concerned, however, I got really lucky. He took my case on as “charity” and is one of my best doctors. Not only does he help me with dealing with the psychological aspects of chronic pain, but also my mortality, how I interact with others, and how to stay optimistic when every part of my body is telling me to give up. He even goes out of his way too help refer me to other doctors, and introduced me to my Social Security lawyer.
Included in this group of referrals was a doctor I met with yesterday. At first, no doctors were willing to accept my insurance. My therapist spent many days and hours on the phone calling offices, asking doctors to take my case, before finally finding one. He of course wants the best medical care for me and sent me off happily to my evaluation, certain that a good outcome was imminent. He couldn’t have known how wrong it would end up.
A big issue I have faced often with my disease is that it’s an “invisible illness”. Unless I’m using my cane, or someone looks closely at the inflammation in my hands and feet, you can’t tell that I suffer from a severe disease. I look totally normal when I’m in horrifying pain. And Rheumatoid Arthritis is a fickle disease. You never know which days will be your bad or good. I was in the ER on Saturday, laying there thinking I was going to die, and on Tuesday I woke up with minimal pain. Which is what the referral doctor saw when I went in for my consult yesterday.
Now when you meet new doctors you always hope for the best. You hope the doctor will be understanding to your condition, see the pain you’re in, and evaluate accordingly. However, there are also doctors, like in any other profession, that become jaded. And in the chronic pain world, this can be due to scam artists. People who say they are in pain but are just looking for drugs, and their next fix. People who cry wolf, begging for sympathy, who either aren’t sick, or are but talk up their symptoms to get better quality meds and or attention. These kind of people ruin it for patients like me.
Unfortunately, the doctor I met with yesterday, was of this jaded variety. She judged me within ten seconds of walking in the door. Her manner was rude, mean, and ineffective. She stressed many times that she didn’t think I was as sick as I stated, only because I happened to feel good that day. There were many thinly veiled references to why I wanted stronger medications and she didn’t listen to anything I had to say. I left the office feeling used and abused. No patient should have to feel belittled by a doctor whom they are seeing for help. She made me feel dirty, and it was very clear she thought I was some sort of heroin addict.
When I left the office I was in such a state of shock that I couldn’t talk. I walked outside and proceeded to take great gulps of air, trying to still my shaking hands and calm my rattled nerves. I drank my entire bottle of water, feeling like my mouth was sandpaper. And finally when I had recovered, I was livid. How dare I be talked to like I was some common criminal, and not a seriously ill patient with a severe disease. And by a medical professional who specializes in chronic pain no less. I was beyond disappointed, I felt shame for that doctor.
We put so much faith in these medical professionals, because they have fancy degrees on their walls, and they worked the time to make it as doctors. But a MD certificate on the wall does not guarantee greatness, and it certainly does not guarantee a good attitude. As patients we have to remember that while they often hold our lives in their hands, they aren’t gods. They are people just like us. And just like the rest of the population, there are definitely some bad seeds, and we need to remember that.
Please visit my donation page if you wish to help support me or share my story with others: Christine Lilley’s Life Fund
My cats are meowing. I can’t see them because my eyes are still closed, but I can hear them. Please, please, please don’t be a bug. I open my eyes at the exact moment that my body registers the pain.
OMG. This is a 15/10 at least.
Damn, I need to pee. This is going to suck.
I push the bed covers off with the back of my hand. My fingers are swollen and stuck in the position of a claw. They look deformed and I shudder at the thought that those days are fast approaching. I push off the bed and cry out in pain as my knees scream. I hobble to the bathroom and take two deep breaths in before sitting on the toilet seat. My knees are purple and huge. It takes me ten minutes to psyche myself into standing up again. The tears fall as I hobble back to bed.
I’m going to take my morning meds now. Maybe they will kick in while I finish sleeping and I’ll wake feeling good. Maybe.
Aureus is on the bed next to my head, meowing. He wants his morning can of wet food I assume. I open my eyes and the pain is still there. Sorry Kitty, Mom isn’t getting up for that just yet.
I need to pee again. Damn it. Pain is still bad, maybe a 13/10. Why haven’t my morning meds kicked in yet?
I stumble to the bathroom, crying out in pain as I sit on the seat. This time though, I can’t get up. The pain is too strong. I sit there for several minutes, breathing in and out, in and out. I try to stand up and come crashing down.
I lean my forehead against the wall, taking deeper breaths, knowing I’m just going to have to get up, no matter how bad the pain is.
I stand. I scream.
God I hope my neighbors didn’t hear.
This time I hobble to the kitchen and plug the cats water fountain in. I fill their bowl with dry kitty food and hobble back to bed. I fall in, not bothering to cover myself and pass out in exhausted pain.
My body must know I can call my Rheumatologist now, his office opens at 8. I must see him today. Only he can tell me how to get through this pain.
The nurse on the phone tells me he has no availability to see me. I ask what to do and she says she doesn’t know.
Well, thanks, that’s very helpful. She says I can come next week. Well, gee, I hope I’m still alive next week. Because at this moment it feels like my body is shutting down.
I take another 2.5mg of Prednisone. I just need to be able to move. Please, please kick in soon.
I’m so thirsty. I hobble to the kitchen but I can’t open the fridge door. The magnet is too strong. Instead I attempt to open a bottle of water from on top my fridge instead. I can’t. I have no strength in my fingers. Shit.
I go for the fridge again. Screaming in pain and frustration I get it open. With two hands I pull the carton of milk out, praying it doesn’t slip between my grasp. I pour a glass of milk and get a straw to drink it with.
Finally. Thirst quenched.
God I’m hot. And itchy. I wonder if ill be able to wash my hair in the shower today. My hands still stuck like claws. It’s hard to squeeze the shampoo bottle on days like this.
I must have fallen asleep again. Why does everything hurt so much? I have to pee again. My knees are so mad at me.
My cats meow at me from the floor. I try to stand but fall back down on the toilet seat again.
I need help.
This is too much pain for me to handle.
I need help.
If you’d like to help me, please visit my campaign page at:
Christine Lilley’s Life Fund
Today I received my fourth donation from an unknown person. I knew some friends and family would be willing to help me out, but I never thought strangers would reach out and help me.
While it may seem like it’s not that different than donating a few bucks at the grocery store checkout counter, or throwing a few coins in the Salvation Army Santa’s bucket, it is to me. Receiving $100 from someone who doesn’t know me, or my life, brings tears to my eyes.
The fact that they asked for nothing in return, no favor, no debt paid back, no strings, and just gave that money out of the goodness of their hearts… it’s beautiful. They didn’t tell me I had to “earn” their respect, their love, their support. They gave it freely, knowing they will likely never meet me, or even talk to me. They gave it to be supportive, because they saw someone who needed help.
And of course I’m not saying that any of the other people that have very generously donated asked for anything in return either. It makes me so happy to see that there are people out there that are so generous and supportive of me and my struggle. It makes me feel like they all are sharing the journey with me. And more importantly, that they want to.
I guess today I am just overwhelmed by the generosity of people. Of my friends who have graciously donated; of my mom’s friends who have reached out to help their friends daughter, some of them having never met me either; to my family members, near and far, some even on different continents; and to the strangers who gave so openly.
Thank you for showing your love for all the right reasons, and for never asking me to earn it from you.
For those who’d like to donate and haven’t yet:
As part of my ongoing treatments, I often have to take several trips to the hospital. For a long time these trips were just visits to the ER when the pain was unbearable or I was having trouble breathing. And when I say often… well it was more like 2-3 times a year. But, as my disease becomes more aggressive by the day, and my body continually turns against me, I find myself making more frequent “trips”.
At the end of April I found myself in the ER late one night with unbearable side pain. I was terrified that it was going to be appendicitis or something else requiring surgery. One of my biggest fears of being at the hospital is finding myself in a circumstance of being put under. I’ve read every story out there of patients not waking up from general anesthesia, or worse, being under but paralyzed, and yet feeling everything.
The nature of my disease, and being sick all the time, is that when I’m at the ER they always find something new. On that particular occasion the side pain was due to a compression fracture in my spine. Oh goody. They took CATscans, X-Rays, blood tests, and an ultra sound. This fateful visit to the hospital was how we were able to find the cancer. Had we not taken that scan, I may have gone months, maybe even years, without treating my Lymphoma. So in a way, the ER saved me a bit.
Because of an unknown chest pain issue I’ve been having I was referred to a GI doctor recently. And his unfortunate diagnosis was that I had esophagus issues and that we should do an Endoscopy. And hey let’s kill two birds with one stone and take a biopsy of the tumor currently taking up residence on the outside of my esophagus/stomach junction. For those of you that don’t know what an endoscopy is… It’s a procedure in which they stick a camera on a tube and push it down your throat to look at the inside of your esophagus. Didn’t seem to scary to me until I heard I would have to be put under. Are you kidding me?
So, two weeks ago my mom and I took the trip down to Queens Medical Center so that doctors could have a look-see at my insides. I wasn’t allowed to eat or drink anything for 12 hours prior to the procedure so that nothing would be able to “come up”. My time slot wasn’t until 2:30, and with Mom deciding to fast with me, we were two very grumpy ladies by the time we got to the hospital. Upon being admitted, I was only allowed a very small sip of water to take my midday medications with. Not being able to eat anything was pretty frustrating, but the hardest part is no fluids. My mouth was like sandpaper, my lips were dry and chapped, cracking if I opened my mouth too wide.
After taking my vitals, and having me change into yet another fashionable hospital gown, I was put to bed in a sense, and told I had to lay down until it was time to go home. A painful IV application, and an exhausting medical history followed until finally it was my turn to go in. And that’s when the all-consuming anxiety started. This is when good bedside manner really plays an important role in patient care.
I was wheeled into what was possibly the scariest hospital room I’ve ever been in. It was filled with big machines with many tubes, and cold metal trays with creepy looking implements on them. I don’t understand why I had to be awake to see that room. They should put you out before entering this room.
Without any warning, a bitter cherry-flavored spray was pushed into my mouth, causing me to choke and gag. I dry heaved several times, before finally getting it down and taking large gulps of air. Only to have it forced on me three more times. A numbing agent, they told me, once I stopped gagging for the final time. I wouldn’t have had a problem with that had they only given me a little heads up before violating my mouth. That’s when the real fun started. My head was strapped to the bed, my hands and arms bound at my side. There has got to be a better way to do this that doesn’t cause all consuming panic for the patient. Did I really have to be awake for that??
Finally the surgeon came in and said hello, revealing that it was my GI doctor, the man who insisted I go through this nightmare to begin with. I started to say hello, but as soon as I opened my mouth the nurse jammed a hard green plastic spreader in. I felt my already chapped lips crack instantly. Had my mouth and throat not been numbed by the cherry death, I’m sure I would have tasted blood. The doctor then asked me a question which seemed ridiculous since there was no way I could answer with the plastic piece in my mouth. I mumbled a reply and then I was out.
The next time I opened my eyes I was back in the recovery room where I had left Mom. She was dozing on a chair next to my bed. A glance at the clock and I figured I was probably out for about 40 mins. My mouth, still sandpaper dry, was no longer numb, but my throat burned like I had Strep. A lovely nurse brought me a couple of single serving cups of POG, which I drank down in record tine, and a funky looking bar in brown paper wrapping. I don’t know if it was actually tasty, or my hunger fueled the flavor, but that blueberry snack bar tasted like one of the best baked goods I’d ever eaten. I shared it with Mom since she had fasted with me in support.
All I could think was “Thank goodness that’s over and I never have to do that ever ever again!”
Unfortunately, the next night I found myself back in the ER, with “complications” from the procedure, which was just a fancy way of saying I couldn’t breathe. And like I said before, we always find something new when we go to the ER. It may not be what I came in for, but I always leave with a new diagnosis. The CATscan I received that night showed fluid in my lungs. Great. Pneumonia. Possibly. ER’s hate to diagnose, so it’s always “talk to your PCP for more conclusive results”. Which is their way of saying ” We don’t want this on us”.
A few days ago at my GI doctors office, we received the findings from the procedure. The tumor was benign, leaving only the lymphoma in my upper chest to worry about. Little steps. Progress. That’s all I can ask for. But still, no reason found for this weird chest pain… My doctor was not happy. Especially with the newly found fluid in my lungs. So now I have to be referred to a Pulmonologist. Yet another doctor to add to the roster. And what to do about this continued chest pain, he mused.
“You know what,” he said, “I’m not convinced. Let’s do another Endoscopy.”
I’m sorry, WHAT?!
Oh, hell no.
Please visit my donation page at Christine Lilley’s Life Fund