Merry Christmas Arthritis.
I see you’ve started celebrating early this year.
I thought with the holiday you might have wanted to sleep in, or perhaps take a day off completely.
It must be tiring working so hard day in and out.
Making sure my flesh is inflamed in all the right places, breaking down my joints, figuring out new ways to destroy my body from the inside out.
Sure must be exhausting work.
That’s why I thought you might like to take the rest of the month off.
Surely you deserve a break.
Put down those chronic pain inducers, your crafty invisible illness disguises, and just relax.
Have an eggnog.
As for me…
Well it would have been nice to wake up on Christmas Day pain free for once.
Hell, I would have even taken a 5/10.
Oh, don’t you worry, I wouldn’t have spilled the beans on you. It could have been our own little secret.
Just between the two of us.
You could still do it you know, it’s not too late…
Ease up on the inflammation throughout my body.
Turn a blind eye, and stop the purple bruising around my knuckles and feet.
Look the other way as you pull the swelling from around my joints, making it possible for me to walk without limping.
What a great Christmas present that would be.
Turn my hands back to normal so they can move again without looking deformed and useless.
Drain the liquid from around my knees so I may bend down to hug my family and friends without holding back screams.
Ease up on the pounding inside my head.
Today of all days, let me feel happy on the inside.
Just this once.
Please, Arthritis, please.
Let me enjoy one normal day.
Let me be pain free.
It would be such a lovely gift, one that I would cherish for a whole year.
Let me have a day without wincing, a day without tears, a day of fresh steps forward, and none back.
Let me have my Christmas.
Are you there, Arthritis?
Can you hear me?
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
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
That’s what my body feels like.
Like every single bone has shattered, and the pieces are just bouncing around inside my skin.
Every movement is an excruciating practice in immobility.
Standing is impossible. My feet feel like they are made of broken bones, pushed together as if in a sand box with no escape. Each step worse than the one before.
My shoulders feel dislocated, my elbows cracked. If I move my arms above my head I can almost feel the pieces rubbing together, mocking me with their torturous pain.
It all feels broken.
My hips laugh at me as my whole body shakes in a desperate attempt to get comfortable. They mock me as I feel bone grind against bone.
My hands look deformed. Each finger swollen beyond recognition, purple and distorted. Once long and slender, all they look like now are the broken tools of something that once was.
I cry. And it hurts. The broken feeling bones shake under my skin as I take deep breaths attempting to regain control of this body that doesn’t feel like mine.
I feel broken.
It feels broken.
I am broken.
This is a familiar debate among my friends and family and I. There’s my side: I’m the one with the disease, so therefore I know what pain and illness feels like in my body; I know what it feels like to go through day to day life as a disabled person; I’m the one who experiences medical treatments, infusions, needles never-ending in my arm; the familiar looks of annoyance when I use my handicap placard in the grocery store parking lot.
Yes, I understand that as someone who is with me all the time, you may experience some of these things as well. As the driver of the car that we use, the placard can bring you dirty looks and pissy whispered comments. I understand that you probably read up on my illness and maybe even medical journals so that you can be informed. I get that you’ve read up on all the healthy diet options out there and have just realized that if I go on the paleo/vegan/raw/gluten free/magic moon rock diet I will be cured of my disease, thusly angering my doctors who would prefer I stay attached to the hip to Big Pharm. I understand this. You “know” these things. But the way you “know” things is not the way I “know” things. Your “know” is an opinion, while my “know” is a fact. And I’m sorry if that offends you, but that’s the truth.
I saw a new doctor this week, a Pulmonologist, and he had some opinions on my current state of health. We were looking at my most recent chest X-Rays, the ones that three of my regular doctors looked at and agreed that I had multiple hairline fractures in my ribcage. He hum’d and ha’d over the images and then pronounced that he didn’t believe I had any fractures, or Osteoporosis for that matter. Well, I wasn’t there for his bone density opinion. I was there to discuss the fluid in my lungs, and whether or not it should be removed. His decision was that it shouldn’t. End of story. But doctors love to weigh in on everything, including my chest X-Rays. Well, sir, thank you so much for doing your actual profession of looking at the fluid in my chest, but I don’t really want to sit here and listen to you weigh in on something that three of my regular doctors and an ER staff have already concluded. He pointed to the arrows on the screen that the X-Ray specialist had made to.point out the fractures. Next to the tips of the arrows I could see the thin lines that my Rheumatologist, PCP, and Therapist had all coined as hairline or stress fractures caused by early onset of Osteoporosis.
“I don’t think these are fractures,” he stated. Um, ok, kudos to you for having an opinion. But I’m going to go with what three other doctors have confirmed. And most importantly, I’m going to go with what I personally know.
I KNOW what a broken bone feels like in my body. It’s a very specific feeling. In fact the first morning that I had the pain, I deduced it was broken ribs before even seeing my doctor or getting an X-Ray. I was the one that called my PCP and told her I had a broken rib and needed it looked at. I’ve had broken bones before. In fact quite more often in recent days due to the osteoporosis. And this chest pain was so sharp and intense I knew exactly what it was the moment I felt it. Its MY body. Don’t you think I would know by now what goes on inside it?
Another ‘I know VS You think you know’ example is the what seems like never-ending debate on what diets out there actually cure incurable diseases. My mom has made it her job to be in the know of what every new publication, article, idea, fad, and suggestion is out there pertaining to my illness. She decided quite some time ago that Rheumatoid Arthritis can be cured by healthy eating. First it was a gluten free diet, which for awhile was all the rage with health food nuts and weight loss enthusiasts. Gluten, she told me, was the cause for my inflammation. Where mom is concerned, I have learned that sometimes it’s best to just give in to whatever diet/idea/conclusion she’s into at that moment because often part of the idea has merit. And in most cases (I stress most) it’s no harm no foul.
So I tried gluten-free for three months. I’ve also tried the juice cleanse, the tbs of apple cider vinegar a day, vegetarian, no dairy, and no sugar. Hmmm, as it turns out, I still have really aggressive Rheumatoid Disease. Maybe it’s that I can’t seem to track down any good magic moon rocks…
Look, I agree that there are doctors out there that push more meds as opposed to healthy lifestyle. Most definitely. Big Pharm is no joke. I’m sure doctors get incentives for pressing certain types of medications, or quantities, on to their patients. In fact this morning was one of the first times I heard my Rheumatologist verbally push for more exercise instead of just changing steroid dosing. But at the end of the day, these doctors are the ones keeping me out of bed. These medications help me function on any level. Yes I agree that healthy diet and exercise will make anyone feel better.
My point is that while I know that healthy diet and exercise are essential to any body (especially those that are sick), that alone isn’t going to cure me. Maybe if we were back at the beginning of my disease, when the pain was less and I was still able to work, a strict diet and mobility may have been key in getting me well faster. However at the same time, there is no way to know if that would have slowed my symptoms and made me well. It hasn’t been proven scientifically, nor been printed in any medical journal as the cure of Rhematoid Disease. So while I agree that yes a healthy lifestyle can be key to living a healthy life, I know my own body, and so far it hasn’t miraculously cured itself through that practice.
Don’t you think I know what my body feels like? Do you think I don’t know what it’s doing, what it’s going through, what I can and can’t handle? I know my body. It’s mine. I know what it’s going to do, and what it’s capable of. I know because it’s me. Your “know” is your “opinion”.
Say it with me again. My body, my rules, my knowledge.
To help me raise money to keep this body healthy and housed, please visit my donation campaign at:
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.
Amongst the myriad of painful issues I have alongside my Rheumatoid Disease, I’ve been dealing with a new beast, Osteoporosis. Annoyingly brought on by overuse of prescription steroids and chemotherapy, Osteoporosis is an evil bone depleting demon. According to my latest x-rays my bones look like lattice on the inside, more closely related to Swiss cheese than the solidity they should be.
A few weeks ago I slipped on the stairs, thinking that I’d sprained my ankle. As time went by and the swelling didn’t go down, Mom and I decided that an X-Ray might be a good idea. Last Friday our suspicions were confirmed with a stress fracture in my right ankle. Since a heavy cast would prove more painful than helpful, I was told to wrap it up, put ice on it periodically, and don’t do any jumping jacks. It was a bummer, especially since I already have stress fractures in my left foot.
This past weekend was exceptional. I was more active than I’ve been in a long time. Went to a movie night at a friend’s house, a 7 Deadly Sins themed costume party, and a relaxing afternoon chatting with a new friend. Unfortunately, on Sunday morning I woke up with a strange sharp pain on my right side. More than a pinched nerve, this pain felt like I’d broken a rib in my sleep.
As the day went on the pain increased, getting worse and worse, especially when I would bend to pick something up, or stand and sit. By Monday morning the pain was excruciating, so bad that I cancelled two medical procedures set for this week including another endoscopy and a mammogram to check my Lymphoma. I called my PCP and asked if I could come in for a chest X-Ray. Of course I was hoping for the best, a pinched nerve or maybe just a bruised bone.
By the end of the day the results were in and my suspicions were so much worse than anticipated. Not one fracture, but several. Several! And how? It’s not like I’d been hit by a bus, or trampled by the running of the bulls! But that’s the evil beast of Osteoporosis. Once your bones turn into Swiss, fractures start up. My doctors warned me I’d have to be very careful from now on, and to start osteoporosis medications as soon as possible.
But that’s another yuck factor. I spent all of last night reading up on Forteo, the drug my Rheumatologist recommended I start for Osteoporosis. It’s a daily injection with some of the most awful side effects I’ve ever heard. There is no chance in hell that I’m going to inject myself daily with a drug that not only makes my arthritis pain worse, but also increases my exhaustion and fatigue, causes severe nausea and vomiting, and turns me into a mindless drone. That’s right, one of the main side effects is loss of interest/pleasure, discouragement, and increased depression and suicidal thoughts. Are you f**king kidding me?! No. No. No. No. No. No. No. Did I mention no? And that’s just the worst ones, the side effect list is a lengthy one. It also seems that I’d be so dizzy and disoriented that I may have to stay in bed mostly.
That’s not a life. That’s not even half a life. I’d rather be in pain and rival Mr. Glass than give up who I am. I want to live through this, not just survive. Emphasis on the word “live”.
So if osteoporosis wants a fight, I guess I’m forced to go into battle. I just wish I didn’t have to be in excruciating pain during it.
If you would like to help me by making a donation to my medical fund, please click here: