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.

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.