Our footprints

I recently ended a two week long road trip around the South Island of New Zealand. A trip that I never thought I’d be able to take at this point in my life.

At 36, I never thought I’d be struggling under the burden of multiple chronic illnesses. Never thought that I would live each day in pain and fatigue, wondering if or when it would all end. In March of 2016, one of the eleven doctors and specialists that I saw on a regular basis told me that I was living on a clock. A clock that no woman in her mid-thirties should have had to think about. A clock that was slowly counting down the time unto which my life would end. I had time, years in fact. But not decades, like most my age looked forward to. Ten years minimum, fifteen if I got lucky.

I took that news on my own, silently in his office, starting at my hands as if they were supposed to provide me with the answers he didn’t have. If they could find a medication that worked for me, more time could be bought. But they hadn’t found anything in the years leading up, and every day my disease turned more aggressive. Every time I visited a doctor a new diagnosis would be presented, or the bad news of a failed medication would be shared. Years of allergies and intolerance to the leading drugs for my diseases, countless failed treatments, and pain, so much pain. And then to hear that despite all my optimism I was going to die sooner than maybe even my own parents…

Five months later I landed in the Intensive Cardiac Unit at Queens Medical Center for ten days. I survived a “multiple cardiac event”, according to my cardiologist and the medical team that looked after me. Despite my doctors projections, my body had other ideas in mind for my time left on earth.

But something changed in me the night that I almost died. It’s not that I wanted to go… Sure some of us living with chronic pain have been down that road where we wonder if the pain is worth going on. Nothing as dark as giving into those thoughts though. And in the middle of my second heart attack of the night on my third night in hospital, apparently when the pain became too great that I actually blacked out, I had an epiphany.

No, I did not “see the light“. I mean yes, there was light, but clearly it was the doctors shining something in my face trying to wake me. I did however feel like I had a choice. A choice on whether to let go, or to continue on.

I don’t know how long I was in that place, probably only seconds. Later my doctors told me I could have died. And I knew if I had been willing to give up, I would have. But something had changed. Despite all the pain, and the knowing I didn’t have long, I still wanted to continue. Something told me that I had purpose.

A year and a half later I finally understand what that is.

Earlier this year I made the life changing decision to move to New Zealand, as healthcare was more accessible for me there as I was a citizen. More so than it was in the US, as it wasn’t affordable, even on Federal Disability. It was a chance to turn my life around as well, live healthier, make friends, maybe find my purpose.

I started bi-monthly Infliximab infusions in June, and had successfully gotten myself off most of my hardcore painkillers by October. I’d even lost a large portion of weight that I’d gained from years of Prednisone usage. I got some new hobbies, joined groups, and made friends, so many friends. I even started dating for the first time in two and a half years.

Sure, I was still in pain. My disease didn’t magically disappear because I moved. Chronic illnesses don’t drift off when you find love, despite what Disney movies try to teach us. I still spent multiple days in bed, fatigued beyond repair. Lung Disease reared its ugly head in a new diagnosis in August. Lupus followed soon after..

The change was that I felt I was around more people that supported me. People didn’t treat me as pitiful, and because of that I was able to let the real me shine through. I reclaimed the person I used to be, maybe not in body, but definitely in spirit. And I realise now it’s all because of footprints.

Just like others footprints made an impression on me during my illness, my footprints were helping others too. I accepted the love and generosity of friends and strangers in Hawaii because my blog had reached them in ways I didn’t know. I couldn’t see that the knowledge I’d learned in my own experiences were helping people just as those whose generosity helped me. Just by listening to a friend, or sharing a meal, I was leaving footprints on the journey of others, just as they leave theirs on mine.

Today as my partner and I concluded our two week vacation, one that I wouldn’t have taken had I not left footprints on his journey as equally as he left his on mine, I had my epiphany. We were talking with our Airbnb host, just as we were getting ready to depart for the airport, and she shared that she had lupus. She shared this only because I shared that I wrote a blog about living with invisible illnesses. Through this tiny piece of information she came to not only understand that she shouldn’t feel alone, but also some references I gave her for support groups. She had no idea the resources that were available to her, feeling isolated by friends and family who couldn’t or wouldn’t understand.

On the plane ride home I thought about my footprints… If I can leave pieces of myself behind, to help or to grow or to love, then no matter how much time I have left, that time was worthy. I have and will continue to make a difference on those who choose to share my journey with me, just as I share theirs.

Our footprints, my footprints, matter…

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Invisible

Three years ago I used to think I could stand to lose a few pounds. Maybe just off my belly or hips. I wasn’t fat, not even close. I had a beautiful curvy body, with perky boobs, and (what I now realize) a great butt.
But, society pushes images of model thin women on us. Also there’s that constant reminder at the checkout line at the grocery store that we should be buying health food magazines, and basically everyone should just be a vegan hippie if you want the perfect beach bod. The need to be skinny swirls around us every day. So, back then, with societal peer pressures, I was convinced I’d be truly beautiful if I could knock off the slight muffin top thing I had going on.
Gosh, how stupid I was. I look at pictures of me then and realize how beautiful I already was. I didn’t need to change one thing about myself.

Fast forward three years and I look in the mirror to find a stranger staring back. I never knew I could look like this person invading my body. Who is she?
Three years of prednisone has caused my body to double in size. The doctors say it’s water weight, but if that’s the case then someone needs to take a needle to this balloon. This isn’t my stomach, this round thing protruding out in front of me. I look pregnant.
My breasts have tripled in size, but not in a sexy, voluptuous way. They are heavy and hang, and now I deal with breast sweat and the rash of pimples that comes along with it. Gross.
But I could deal with the fat body had I at least still looked like myself. I don’t though. My doctors call it ‘Cushingoid’, but prednisone users more commonly refer to it as having ‘Moonface’. The face in the mirror is not my own. It’s round and flat, my eyes and once beautifully defined cheekbones have become lost in the excess skin. I don’t like her. She’s ugly, and I want her gone from my life.
Three years have past since I started this journey of illness, pain, and suffering. I’ve lost so much of who I used to be. And the only thing I’ve gained is more pain and 70 pounds of “water weight”.

But you can’t see my suffering when you look at me.
You don’t see the holes in my bones that look like the bones of an 80yr old woman, and not those of a 34yr old.
You can’t see all the fractures that Osteoporosis has given me, the tiny breaks that cause monumental pain.
You see me limping or walking with my cane and figure I probably had an accident, not that this will only get worse and in a few years I’ll be in a wheelchair.

My disease is invisible.

You see all this disgusting weight and think I must over-indulge, binge eat, or just can’t say no to food. You don’t know that I fill my days with fruits and vegetables. That I’ve cut out coffee, soda, sugar, and fast food. That my life is full of dieting and exercise and yet as long as I’m on prednisone I will continue to have this round lumpy body. And that there is absolutely NOTHING I can do about it.

I move slowly because the flesh around my joints are inflamed and infected. If you took the time to look closely you could see the swelling in my knees, how fat and puffy they are. You could see that my hands seem abnormally large due to the inflammation. That my knuckles are discolored and squishy. That my feet look like football’s with more swelling.
If you took the time to see how slowly I have to move. That every step I take is calculated to ensure I don’t hurt myself. If you watch my face closely you will see the pain there that I try desperately to hide. That every single movement is like a butter knife slowly being pushed into a bone.
But most people don’t see that.

Because my disease is invisible.

People only see what they want to see.
A fat girl.
A pregnant girl.
Too lazy to walk quickly.
Using a cane for attention.

My disease is invisible.

They don’t see my reality.
The excruciating pain of my day to day life.
Wrestling with myself to do daily tasks.
Willing myself to stand up without crying out.
Not being able to dress myself on the bad days.
Needing help to shampoo my hair.
Crying in my bedroom when the pain and suffering becomes unbearable.

My disease is invisible.

I am invisible.

If you would like to help support my illness financially please feel free to make a donation:
Christine Lilley’s Life Fund
Thank you.

My disease is invisible.

Merry Christmas Arthritis

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.

Today.
Just this once.
Please, Arthritis, please.
Let me enjoy one normal day.
Please.
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.
Please?
Please?
Are you there, Arthritis?
Can you hear me?
Please.

Friday Morning

3:49am
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.

4:05am
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.

5:30am
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.

6:18am
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.
Tears.
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.

7:58am
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.

8:30am
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.

9:05am
I must have fallen asleep again. Why does everything hurt so much? I have to pee again. My knees are so mad at me.
Tears.
My cats meow at me from the floor. I try to stand but fall back down on the toilet seat again.
Tears.
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

Mommy, make it go away

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

Broken

Broken.
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.

What I Know vs. What You Think You Know

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:

Christine Lilley’s Life Fund