Blog Archives

We’ve still got time

For the last two years I’ve lived on a clock.

A clock that has been ticking away the moments to where I meet my end. My illness eating away parts of me that are unseen.

Because of this I’ve adjusted to a “come what may” attitude towards life. I’ve been living free and fearless, feeling that this was the only way for me to live my life to the fullest.

But I have recently come to realize that this may not work for my anymore. I can no longer live in the shadow of my disease.

I have people I care about and friends whom are important to me. The ‘come what may’ philosophy only worked for me when I had nothing to live for and therefore had no fear of what happened to me.

This is no longer an accurate representation of my life.

Maybe it’s that 2018 is in quick approach and it makes us all think about what is important in our lives.

Love. Family. Friendship. Truth. Fun. Happiness.

No I don’t suddenly fear death or the end of my being, despite that always lurking.

No, I don’t fear the clock of life.

I fear the loss of the important things.

People go through their entire lives not being truthful to themselves and others. Life is short, no matter what time clock we are all on. Cherish the time that is given. Share your feelings. Tell your friends they are important to you. Tell your loves what they mean to you.

Instead of being fearless, respect the time you’re given and use it wisely. It’s not to late to be truthful to who you are.

Advertisements

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…

I get scared too

Wednesday was a rough day.

I don’t often have really bad days. Sure, I’d say two out of five days can be bad for pain. Really bad, like not get out of bed til mid afternoon bad. But the odds are that I’d more likely have a good one. Most days I wake up in pain, but it’s manageable..

I open my eyes and I assess where it hurts. Hands? Feet? Wrists? Then I take inventory of what needs immediate help and what can wait. Usually I need to run my hands under piping hot water to loosen them up. Then my day can begin.

Wednesday was a bad day. I knew before I opened my eyes. In fact I knew at about 3am that if be having a bad one. Lately, I’ve been waking up between 2-4am. It’s not that I’m fully awake and can’t go back to sleep. I’ve just been waking up knowing. I wander through my small apartment checking on things, making sure doors and windows are locked, rubbing my cats bellies, drinking some water, before going back to bed.

Some days I go back to sleep. I doze in and out for a few hours and then am able to do things through the day. But not that day. I knew the minute my body was awake it was going to be rough. But the good news was that it was an infusion day. That meant I’d be getting the good meds. True, not in the way I’d like, but I would feel better eventually. And I’d keep feeling better. For at least a month.

I should have known that my bad pain day would run off into everything else being bad. The infusion clinic was a mess. I guess they were short staffed, but no one knew what was going on, or who my nurse was going to be. I should have taken it as a sign, but what could I have done. I couldn’t come back another day, I was going out of town on Friday. Wednesday was the only day, because I usually needed one day to recover. Usually.

I fell asleep as soon as the IV was in and I took my usual dose of pre-chemo Benadryl (to ward off any weird side effects). The plan is that I usually fall asleep during the administering of benadryl and I wake up three hours later as they are taking my IV out. Painless. 

On Wednesday, forty-five minutes into infusion I woke suddenly. Mom was sitting next to me looking at the heart rate monitor with a concerned look on her face. I asked what was wrong but she got up to find the nurse. Apparently my pulse had dropped very low. The nurse had me take a few deep breaths and we waited as the rate on the monitor went back to normal. But that’s when my left foot started to itch. The whole underside felt like I had an isolated attack of chicken pox. Mom took off my sock and started scratching, but then suddenly it was my whole left side. It was awful. There were no hives, no rash, just uncontrollable itching. And then it was like an elephant was sitting on my chest. All I could think of as the nurse frantically called my Rheumatologist was,

“This is it. I’m going to die in this hospital.”

Because what else goes through someone’s mind when something goes wrong in a hospital. That’s where you go to get FIXED. Everything suddenly felt clouded and fuzzy, although maybe that was me just losing consciousness… But for a moment I wondered if I would wake up if I fell back asleep. And then I fell asleep…

I woke three hours later to my infusion finally being over. Instead of the usual 2-3 hours, I had been there for 5 1/2. It was the scariest time I had spent there. Ever.

I was nearly delirious leaving the hospital. I had cotton mouth. I was dizzy. I was hot. Everything felt weird and unfamiliar. Mom kept asking me questions but I couldn’t hear her. It sounded like the mumblings of an adult from every Charlie Brown cartoon I’d ever seen. I was confused. Lost. Scared. The sun seemed too bright. The noises of the hospital sounded like shouting. Why was everyone shouting? Mom looked confused. She didn’t understand what was happening to me. I jumped at the touch of her hand on my arm leading me to the car. It felt like my fibromyalgia was back. My skin tingled, hurt even. I was scared. Of everything.

I guess people don’t realise that it can happen to me too. Just because I go through the motions, live each day as I need to, it doesn’t mean I don’t get scared. In that hospital bed I wasn’t sure if that was my end. If my time had come. Luckily it hadn’t. But the point is I didn’t know that.

I get scared. I’m human.

I get scared too.

If you would like to help support me medically and financially I encourage you to visit my campaign page:

Christine Lilley’s Life Fund

Addressing my fears

Today my therapist told me that it’s important to address my fears. I guess there is a part of me that’s been hiding from them and from the reality of my disease. So here they are in list form so I can start working on them…

**My own mortality

Each week I am faced with a new diagnosis, often scarier than the last. Two short years ago I only had Rheumatoid Arthritis, and now it’s super aggressive, and I also have Lymphoma, Osteoporosis, possibly Cervical Cancer, and a soon to be increased risk of Bone Cancer.

This isn’t just me looking to the future for remission anymore. With the increasing fractures brought on by day to day activities, the worsening symptoms and side effects, it’s been made clear to me that I am not getting better and that I should be aware of all possible outcomes, including death.

33. I’m 33 and I have to think about the chances of my life ending in the next decade, and not five to six.

**Homelessness

Its becoming more and more of an increasing reality with each passing day.  I haven’t raised enough to move out and I need to find a new place to live very very soon. I’ve asked, even begged, family members to help and have received very little in return. I always thought that if my circumstances became dire, somehow someone would step up and help me. It’s incredibly horrifying and scary to realize that I was wrong. Blood is not thicker than water as it turns out.

I can only be eternally grateful that friends and even friends of friends have stepped up and made amazing contributions to my health and wellbeing. To those who have supported me selflessly… Thank you.

**Pain

You’d think I’d be used to the pain by now. But I’m not. I thought I had experienced the worst that my body could deliver in the form of inflamed joint pain… Then my ribs cracked. I felt every bump, every pothole, and every imperfection on Hawaii’s roads today as if they were a tiny Armageddon inside my body. Each time the car hit a crack in the road my ribs felt like they were splitting slowly one by one. Each time we came to a stop it was as if I had all the air sucked from my lungs, an elephant placed on my chest, and a drill sergeant yelling at me, demanding I take in a deep breath.

Every day I feel more pain than the last. A new nightmare setting up shop inside a body that welcomes it with open arms.

**Loss of self 

All these crazy medications on the market these days have some of the worst side effects you can imagine. And the insanity of it all is that I started with ONE DISEASE. Rheumatoid Arthritis. But to fix the RA and manage the pain, I had to take steroids, biologics, and opiates. These three types of meds can cause a myriad of health problems including exhaustion, pain, weight gain, cancers, loss of Bone density, dizziness, compromised immune system, and more. I received ALL of these complications including two types of cancer. So instead of ONE problem, I now had several. Two years later I have now ALSO developed Osteoporosis. And the only good medications on the market for really helping with that can cause you to become half of yourself. To function on this medication I will have to have a pain medication pump surgically implanted in my body, take anti-depression and anti-anxiety medications, and basically hermit myself in my home as to not accidentally break my body.

Yes, this is definitely the life I’ve always dreamt of…

But you know, I’m lucky they tell me. Lucky to be alive.

Alive… Is that what this looks like?

Please help me not be homeless by donating here:

Christine Lilley’s Life Fund