Mulling Over A Dream

It was quiet when my eyes were closed. It was when I could be at peace despite my world falling to pieces. I could be in the middle of a crowded room, or in busy store, or even now, as I lay on this cold bed in the middle of the local emergency room… With my eyes closed, I could shut the ugliness of the world out, maybe even pretend I was well again.

Not even a week had passed of 2018, and here I was with an IV in my arm, my mom sleeping next to me in a cold hospital chair. As per usual, no one had any idea what was wrong with me. A fate I had grown accustomed to. Leaving five hours later with a prescription for painkillers I’d never fill, and a suggestion to “get some rest”.

My problem is I can never get enough rest. Not if I want to attempt to have a life by any standards. I can’t sleep my life away afterall.

So in that hospital bed I lay with my eyes closed, waiting for no news. And in that quietness I fell asleep, mulling over a dream. A dream I’ve had many times. One that I know now will unlikely come true. Not so much a dream, but more of a memory…

The last memory of my other life.

The life I had before this was all I knew.

A life that wasn’t filled with medications, cold hospital rooms, and the constant threat of more pain, more fatigue, and a new diagnosis every six months.

Furthermore, a life where I would find someone who loved me for me. Where they wouldn’t look at me and see broken. Where they would marry me no matter how many years we may have together. A life with choices, and maybe children.

It was a good dream. But eventually I woke up and opened my eyes… Back to the cold hospital bed, to the doctor telling me she could do no more. Back to my reality.

I slept for a long while that day, once I had climbed back into my own bed, and my mom departed for the long trip home. I was used to this aftermath of hospital visits. Used to the bed rest, dehydration, and exhaustion that inevitably followed. Used to the loneliness, the unbearable loneliness that came with my disease.

But this time something new followed, I was not so alone. He came with food, and hugs, and the support I needed to get through it without falling apart. And in the days that followed, I realised his love allowed me to mull over a new dream.

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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…

Texting Doesn’t Say I Love You 

Have you noticed how texting seems to be the only way people communicate these days? We now live in a world where we feel naked without our cellphones, and texting has become our life line with the rest of society.

 When I was 17, and in college, my mom bought me my first cellphone. I was so stoked about it, because unlike a lot of my peers, I never had a pager which was all the rage in the 90’s. I quickly became quite proficient in texting with one hand, usually by my side, unbeknownst to whichever professor was droaning on at the time. This was also around the same time that I got my first computer, and was introduced to the wonders of the internet. I’d used the web before, but having a personal computer opened up the world of chat rooms, Napster, and instant messaging, that I’d never had access to in the past. Instant Messenger, texting’s online bosom buddy, allowed me to be whomever I wanted when talking online. Without having to deal with social inadequacies and shyness, I could have long conversations with friends and strangers, and in many ways, it boosted my confidence for in person conversations as well.

18 years later, and countless cellphones and computers having come and gone, I feel like our lives have been taken over by something that once seemed so helpful. Not having to have a full conversation with someone just to ask a quick question, was made easy by text messaging. You could avoid a phone call with an awkward acquaintance by just  sending an email. But when did our lives get taken over by shortcuts?

A few weeks ago, my cellphone alarm pinged to let me know it was a close friends birthday. And without even thinking, I punched out a quick “Happy Bday” text to the person, followed by a post on their Facebook page. It wasn’t until I had finished that I realised how very impersonal of a gesture that was. This was one of my closest friends, and all I was doing was sending a text? And it’s not like I didn’t have the time to call…. I’m disabled, living and working at home, all I have is time… I started to scroll through my contacts to call her and wish her happy birthday like a decent person should, but then I stopped. I remembered that they had only sent me a Facebook post on my own birthday, a few weeks prior, and hadn’t called either. It’s not this fact that stopped me from making my own call, but a thought occurred to me that maybe it just wasn’t that important to them, that maybe social media was their preferred way of contact. And so I just left it, opting to do nothing more. 

But the memory of the ordeal has lingered with me for weeks now. I am constantly reminded of scenarios that have happened in recent years where texting has not served me well. One of these circumstances was the ending of a relationship a few years ago. A boyfriend of mine and I were not getting along very well, and after a long night of texting back and forth, we ended our relationship. The very next morning I thought how preposterous it was that we would break up over text. There are no nuances in texting. You can’t see the expressions of the person you are talking to, nor hear the tone of their voice. So much can be lost in translation. And yet, we left it as is, and did not ever try to talk about it in person.

Someone once told me that you are at your most honest when you are drunk, because your inhibitions are lowered, and you speak more freely. I believe this is the same with texting and instant messaging. You aren’t looking directly at someone, so you often say a lot more than you would, because you have no audience. You can hide from rejection, or dislike, or answers you don’t want to hear, because you aren’t face to face. You can’t see the other parties expressions, and that gives you a certain amount of freedom to be who you want to be without instant repercussions.

Social media is a lot like this as well. The personal  page phenomenon brought to us by MySpace and Facebook, have allowed us to be whomever we want to be online. Sure, people see you, but it’s the You that you decide on. You control what pictures you post, you control what personal details you share, and you even decide what comments you write. You have the ability to remake yourself in a sense. Of course, those who know you well, know the truth. So you can’t get away with to many “remakes” of the reality, without getting caught out. 

I’ve often been bewildered  looking at people’s pages that post the opposites of what their  lives are really like. People who have complained of being in dead end relationships to their close friends, end up posting pictures of the perfect marriage online. Or people who are struggling with finances post pictures of themselves purchasing vacations or going on shopping sprees. Why do we do that, do you suppose? Why is it so important to us to show everyone a different reality? Why do we portray ourselves differently online or through text messaging?

And when did texting and email and social media become the only way to communicate? Are we afraid to have real conversations with people? What do we fear they will hear in our voices? The truth? Sadness? Loneliness? Our online lies?

Are we supposed to feel loved when receiving a text message asking how we are doing? Are we supposed to feel supported? This person took five seconds from their day to send me an eight word message, I guess they really care? When did we stop making the time to really check in on each other? When did we put texting and social media before our relationships with one another?

And where will we be in another eighteen years? Will conversations be completely redundant by then? I don’t think I want to know.

Dying doesn’t mean “done”

It’s been made known to me recently that a lot of the people in my life have the wrong idea about what’s going on with my illness. I suppose this is due to lack of knowledge and understanding, as well as not wanting to open the can of worms that is the discussion of my disease. I get it. It’s human nature to be curious, and yet at the same time awkward.

Some friends and family come right out and ask the questions they want to know the answer to. They are direct, clear, and concise. They want to be in the know throughout the whole process, maybe this helps them be more supportive.
Others wait for me to update them with bits and pieces on my healthcare. They follow the news as it comes in, rarely asking questions, content with the bare minimum.
Then there are those that do a bit of their own research. They read articles about Rheumatoid Disease, drug options, new fad diets, and testimonials from people who’ve had less aggressive strains than I. They endlessly give their opinions on the medications I should be taking, the weight control and dieting that I should be on, and how I should live through my illness. Not from the stand point of a medical professional, but from a person who subscribes to Rheumatoid Arthritis Today, and keep their screens open to WebMd.

I’m happy that the people in my life like to be informed of my disease, and like to stay in the know to an extent. But at the same time, no matter how many articles are read, or how often they come to visit (which lets be honest, is only on my good days), it’s not the same as experiencing it. No one will ever know what goes through my head, or my body. It’s easy to say “I understand what you’re going through” when talking about a wicked case of the flu, or a nasty migraine. But they can’t possibly know what it feels like when I wake up feeling like a bus hit me in the night. Or that getting up from the toilet feels like my knees have dull butter knives being slowly pushed through them. That when I try to get dressed my shoulders feel dislocated. And that showering when your hands ache is one of the hardest things I’ve ever experienced. Biting my shampoo bottle to get a smidgen out on to my wrist because my hands are in the immovable claw position, or using my mouth to hold my loofah has been one of the most trying times of my life. 34 years old and I am an invalid on most days. Tell me, what article can tell friends and family how that feels? I need to buy it up in bulk and send it to everyone I know.

 

Sometimes being ill is the loneliest feeling in the world. Even with the unending support of my mom, the only person besides my doctors who has the closest to accurate idea of what my life is like, it can be hard to move through the tides of my disease.

I have 14 doctors whom I work with. 14 medical professionals who have years upon years of experience working with the ill, and still no one can help me. In the beginning, I used to think it sounded kinda cool that my Rheumatologist needed to consult with other doctors regarding my case. I was an anomaly. No one had seen a case like mine before. It was more aggressive, more damaging, and more out of control than anything any of them had seen. But I quickly realized that that kind of “special” isn’t the kind anyone aspires to be. It’s not special or fun that no one can help me. And people wonder why I don’t want to talk about it. Why I don’t care to share. I mean, what do you say to someone who wants to know what dying feels like?

Because at the end of the day, that’s what’s happening. Some of my doctors have had the nerve to say it out loud. Others just ignore it and keep their mouths shut. No doctor wants to tell their patient that they can’t help anymore. Sure, they can keep prescribing medications as they are manufactured, and talk about healthy lifestyles, and a positive can-do attitude. But it must be hard for them. To have to look in the face of someone who they don’t know how to help. It’s the failure a doctor never wants to know.

 

As for me…

What do I say to you? What do I say to my doctors? What do I say to the family and friends that have the guts to ask me how I truly feel?

I guess it’s that I feel everything and nothing.

Not the answer everyone wants but the only one I can give.

I feel like I’m a broken record when I talk about how much pain I’m in. It sometimes feels like no one really believes me when I say it hurts everywhere. I’m tired of being asked what my pain scale is from 1-10 when it’s always more like 50/10.

I cry almost every day in the comfort of my bed away from prying eyes, so that I can stand in front of everyone else and smile. I’m not smiling for me, I’m smiling for them. So they don’t have to be touched by my pain, my life, my suffering.

You want to know what it feels like to be dying?

It feels like living. I haven’t died yet. My life still continues. My body still lives, the blood moves through it, and I still walk. Dying feels like living each day in the knowledge that I’m still breathing. That I am still getting up out of bed every day. Dying tastes like the chocolate brownie I ate an hour ago. Dying feels like the hot shower I had this morning. Dying feels soft like the fur of my cat as I stroke her belly.

These are probably not the answers that people wanted. But I’m not ready to live up to their expectations of what my illness should feel like. I know what it feels like and that’s all that matters. Well, that and the fact that while I may be dying, I am certainly not done.

 

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

I am blessed

I am blessed by the kindness of others.

I am blessed by my best friend Dustin, who selflessly bought me an airline ticket to come visit him because I couldn’t afford to attend his wedding.

I am blessed by my friend Bergy, who contacts me daily to see how I am, or if I need anything, and whom spends time with me every weekend and makes sure she gets me out of the house.

I am blessed by my surrogate aunt, Janey, whom even after many years of not living in California, still makes time to see me when I’m in town, and keeps in contact with me often to make sure I am doing well.

I am blessed by my dear friend Catherine, who’s infinite wisdom and love never leaves me, but protects me like a nice warm blanket of support and kindness.

I am blessed by my new friend Lester, whom upon reading my blog and having it speak to him treated my mom and I to a wonderfully decadent meal as a way of showing support.

I am blessed by the people who’ve donated to my cause out of the kindness of their hearts.

I am blessed by my cats whom show me never-ending love and kindness that cannot be equaled anywhere or by anything.

I am blessed by my mother who never makes an excuse when it comes to my health, and sits with me during doctors appointments and infusions.

I am blessed by the people who show me support, love, kindness.

I am blessed.

Please visit my campaign page if you would to show your support by helping me pay rent on my donation-paid apartment…

Christine Lilley’s Life Fund

To ER or not to ER, that is the question

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?

Fever?

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.