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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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You’re not sick enough

For over four years I have allowed myself to entertain the idea that maybe one day I would be well. It would usually come after periods of having little to no pain flares, or a burst of energy after weeks spent bound to my home. Small fantasies if  you will, of seeing myself hiking again, or being able  to travel more of the world like I’d always wanted to. And then these visionary bubbles of hope would be popped every time a doctor would tell me I was getting worse, or that I’d procured another illness, to add to the ever increasing pile of shit I was already dealing with.

One of these frustrating moments was just a couple of months ago. It was on the same day that my rheumatologist told me I could re-start Remicade, a drug that had started working for me just before I left Hawaii. In hearing this news I was in such a great mood. Having only received three infusions before leaving the island, the drug had already produced amazing results, doubling my energy, and lessening my pain flares. I was stoked.

However, that excitement was short lived when my doctor informed me that recent test results showed I had developed Pulmonary Fibrosis, a lung disease that can be fatal. It turns out that the severe inflammation that Rheumatoid Disease caused in my body had produced scarring on my lungs. It wasn’t yet determined how bad it was, and I was sent for more testing including blood labs and x-rays. On top of that it was also concluded that I likely had Lupus, another autoimmune disease, that my doctors had suspected for many years.

I was devastated. Why was it that every time I started to feel like my disease was turning a corner, I’d turn that corner and walk smack into a brick wall?

Depression came on swift wings with the winters rain, and I started to seriously doubt the years I had left. Research came and went. I talked to my therapist in what seemed like a never ending loop of what if and why me‘s. Every part of my life looked gray, as if I was wearing Eeyore glasses.

But just as nature surprises us with change, so did my mood. The storm in my head began to lift, and with my Remicade infusions, so did my heavy heart. I hate to sound like a cliche and say that my rose colored glasses faded away and every thing seemed okay again, but that’s really what it was like. Without knowing how or why, I found my happiness again, and moved forward at a surprising pace.

I started to exercise a lot more, having finally found the energy to do so. I took long walks that went miles, and explored areas I’d only known as a child. In one of these walks I stumbled across a Cat Lounge, an awesome place where you could literally spend hours petting cats, and resting as they took naps on your lap. Some days, I would just walk up the hill behind my house to a little cafe, sitting by the window sipping hot chai lattes, and writing for hours.

With this burst of new energy, I started to see friends more often, even venturing out more on weekends. For the first time in over four years I was really feeling like my old self again. I even went on a couple dates, and while none of them panned out, it felt good to be out in the singles world again. Energetic, confident, and hopeful.

Now, you’d think that this lovely change in my attitude and physical self would have been celebrated by others. I figured after years of hearing my depression over my illness, lack of enthusiasm for life, and the dreariness of daily pain, that friends and family would rejoice with me that I was starting to feel a little better. Especially with the fact that I had been able to lose 80 of the 90lbs gained on steroids and pain management medications. I mean I wasn’t cured (there is no cure), but it felt good to feel good, even if only for awhile. I knew that there could be periods of wellness, followed by periods of illness. But I wanted to embrace the wellness as often as I could, and make the most of it, while I could.

To my surprise, not many in my life shared my zest in this. You know that phrase “misery loves company”? Well, this was a cracked out version of that. I received a lot of “Well, don’t get your hopes up”, “You’ll probably be sick again next week”, or my favorite not favorite “You could still gain the weight back”.

For fuck’s sake!

Look, I’m quite aware that I’ve been sick-its my body! I’m quite aware there is no cure-I have seen more than a few doctors! And I am beyond aware that my illness varies from day to day, if not hour to hour. But do you understand that when you have a chronic illness that you’ve been told may very well kill you, any day or moment where you feel genuinely well needs to be enjoyed? Can you please let me relish this time where my joints aren’t screaming at me, and I don’t want to cry at the loneliness, and I can just be happy if only for a moment?

Its like I am not allowed to feel well, even if its for a short while. I am the sick person, the sick friend, the sick family member. If I display even a hint of joy, energy, or confidence, then suddenly its this big deal. As if maybe I was faking it the whole time-because yeah, I just faked four years of excruciating pain and fatigue, for sympathy. Instead of letting me be happy, I am berated with “I guess you’re not that sick after all” or “I thought you were too sick to get out of bed”.

For fuck’s sake.

I am NOT sick 24/7. Yes, sometimes I can be sick for days and weeks on end. Sometimes it feels like my entire life is me standing under a rain cloud that follows me everywhere, except instead of rain and thunder, I get new diseases, cancer scares, and Osteoporosis. That sometimes its like I’m in a crowded room screaming and no one can hear me or cares.

So you’d think that when I am feeling good people would be happy? Nope. In the land of Chronic Disease, if you’re not sick and miserable all the time, then you’re not really sick. Or you’re being too optimistic and you need to be brought back down into the ditch of incurable misery, and stay there.

Well… I say NO.

I am not sorry that I don’t look sick all the time. I am not sorry that I don’t feel sick every moment of every day. I am not sorry that you can’t be happy that I can get a moment of peace every now and then. I am not sorry that my new medication makes me feel better some days. I am not sorry that I am not the vision of sickness that you need me to be.

Some days I feel bad, really bad. Some days I feel like I want to give up and die, seriously. There are days when I wonder how I’ve made it as long as I have. I often wonder if it would truly be better if I let my diseases consume me. Yes, it does get this dark inside my head. This is life living with chronic illness.

BUT…

On the days where the pain wanes, and the sadness cloud clears, and I feel like I’ve woken up like a normal person… let me have that. Enjoy the pain freedom with me. If I’m in an optimistic mood, be optimistic with me. Be happy with me, if only for awhile. Don’t make me feel like shit for wanting to spend one day, one hour feeling like a normal woman. In a life where I don’t know how many normal days I have left, let me appreciate the time given.

Let me be okay, if only for awhile.

 

 

Where’s my magic 8 ball?

I read an article online this morning about how patients with RA never know if it’s going to be a good day or bad, and can’t help but agree how very true that is. I wish there was a way to know upon waking if my day is going to be fabulous or terrible; not in terms of mental health, but in joint inflammation and pain.

 

Two days ago I found out that the increasingly bad pain in my right foot over the course of the last three months was due to a torn tendon. Basically I’ve been continually aggravating it by ignoring the pain and walking on it without treating the issue. Of course a torn tendon doesn’t really have a treatment option. It’s really just wrapping my foot tightly with a bandage, and buying an expensive pair of shoes with better arch support. On the day I found out I ended up doing a little more waking than I should have, so I figured I’d be in a fair amount of pain the following day.

 

But yesterday I woke up feeling great. Sure, my foot was still sore from the tendon issue, and per usual I was having light flaring in my hands and elbows as a result of my RA. But it was manageable.

A few months ago I made the decision to be as active as possible on days that I felt good. If I woke up feeling less pain then usual I would make the most out of my mobility, I’d get the laundry done, or clean the house a little more thoroughly. That way if I had a cluster of bad days I wouldn’t feel annoyed that my house was dirty, or run out of clean underwear.

And so when I woke up feeling good yesterday, that’s exactly what I did. I washed a load of laundry, deep cleaned my cats litter box, and swept and mopped my floors. After that was done I even baked a batch of peanut butter and chocolate chip cookies for my friends whom I was seeing in the afternoon. I felt great.

When 1pm rolled around I hopped on a bus and headed into town to the good movie theatres, where I planned to see a $6 movie with friends at 4. I left early so I could stroll through Bed, Bath, & Beyond where I had a leftover Xmas gift card with a balance of $50 remaining. The store was about six blocks from the bus stop, so by the time I got there my RA had started to rear its head. My foot was aching and my hands had gotten a bit puffy. But my fitbit told me I’d already walked my goal of six thousand steps so I was feeling mentally fantastic.

After purchasing a milk frother that I’d had my eye on, I met up with my friends and we watched the new Leo DiCaprio movie, The Revenant. Man, talk about violence. I can’t believe how many parents took their small children in with them. Can you say “nightmares for life”?

My movie got out long after the sun had set, and I didn’t make it home til close to 8pm. On the bus ride home I convinced myself to get off the bus three stops before mine and pick up some chili since the night indeed felt chilly. By the time I sat down on my couch to enjoy my dinner both feet were swollen and discolored in an unappetizing shade of purple. Lucky for me I had picked up a brand new heated foot spa at the thrift store last week for the incredible price of $5.99, so a healing foot bubble bath was in my future.

Because I’d had such a hard day on my feet the day before, but had felt fine the following day, I had hoped that yesterday’s busy day would be followed with another pain free morning today. Alas, RA just doesn’t work that way….

 

So it seems what I really need in my life is a Magic 8 Ball, the Rheumatoid Arthritis version. I can shake it the night before to see what I’ll be dealing with the following morning. If I had one last night maybe I would have foreseen 3am’s brutal attack on my hands and wrists. Or maybe even the night sweats that visited around 5am, leaving me stranded by pain in bed amongst dripping wet sheets.

RA doesn’t have a warning system. We don’t know when the pain is coming. We don’t even know why. There’s no alarm that goes off, telling us to brace ourselves for an attack on our already tight muscles, our continually inflamed joints, the aches that never leave us. One day we are good, and one day we are not. Monday was a rough day, full of pain and suffering. Tuesday was filled with sunshine, long walks, and smiles. Here is Wednesday and I’m using dictation because my fingers can’t hold my stylus to write. We just don’t know what we are in for.

I really need to get a Magic 8 ball. Maybe it can prepare me for what comes tomorrow..

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.

One step forward, Two steps back


After careful consideration, involving a ton of research, I decided to do a nutritional lifestyle change. No one more than me is annoyed at the constant media push towards fad dieting. I get frustrated by family and friends on a daily basis when I hear about the great new diet that will cure me. It’s been a long, annoying process of sifting through rumors and facts surrounding nutrition and dieting. But no matter what is popular to do these days, every medical journal is stating that meat causes inflammation.

That’s a hard one for me to swallow. I love red meat. Steak is where it’s at. If I could eat it for breakfast, lunch, and dinner without any negative body impact, trust me I would. Steak, lamb, bacon, you name it, I’ll nom it. I love cooking it, and I love eating it. But facts are facts. Meat causes inflammation. I have a chronic pain disease dominated by inflammation around my joints. I have to think healthier. And if that means giving up meat for the chance to be in less pain… Well then of course I will try it.

So I researched the diets out there, because there are so so many. I wanted to choose what would be right for me. I gave up chicken a few months ago after all the meds changed my tastebuds. Spicy food became spicier, eggs started to taste moldy, and chicken began to taste metallic. At the same time I started to eat a lot more white fish. I’ve never been a big seafood person. I don’t like the fishy taste of most fish. But I found that fish that swim towards the surface are the ones that taste “fishy” while the bottom dwellers taste pretty yum. So I’m on a huge halibut & Ono kick, with some Atlantic Snapper thrown in for good measure.

With all that being said, I decided to be Pescetarian, which means I can basically still eat dairy, fish, and eggs. Excluding red meat, white meat, and poultry.

And to be honest, I was close to being that already, having given up the metallic tasting chicken, and hardly eating meat these last few months. I decided to make it a bit easier I would take on this task with my best friend who also wanted to get healthy for his own reasons. Just like quitting an addiction, we figured we could support each other in staying away from our common love: beef!

Things were going so well.. For four days anyways. And then Murphy’s Law happened… Turns out I have a special type of Anemia that only people with chronic medical conditions get. And here’s the kicker: I can’t take Iron supplements to make it better because they have a negative reaction with an important medication I’m already on. So, literally the only way I can help my body to be healthy is to EAT RED MEAT.

Are you kidding me? It’s always one step forward, and two steps back with this disease. I’m trying so hard to be well and healthy and I feel like my body is always trying to push me down.

I try to quit Prednisone and my body will shut down so the only way it will survive is to get more of the drug. I try to be healthy to lose the weight that prednisone causes, and I develop a disorder that forces me to eat meat that causes more pain. Can I never win?!

How about one step forward, and then another, and another, and then another til I win the race?

 

 

Osteoporosis can suck it

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:

Christine Lilley’s Life Fund