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Chemotherapy…a powerful drug no matter the diagnosis

This morning I start treatment again, after a 4 month hiatus while moving and settling in another country. It’s been a long time since I’ve had medication in my body that actually helps my Rheumatoid Disease, as opposed to just put a drug band-aid on it like steroids do. Four months is a long time to go without critical medicine that helps your mobility and pain.

Normally, I am pretty open with others about what treatments I am on, preferring to be upfront about everything. I am not ashamed or embarrassed that I used opiates for a long time when the pain was too much to bear. I won’t lie about the fact that four years of steroids caused my weight to go up so high that I didn’t recognize myself in the mirror. I am also not going to be bullied into the fact that a lot of people don’t like when I use the term chemotherapy to describe my treatment.

This is one of the key issues that we as patients deal with in Rheumatology. Not many can grasp the fact that our diseases are very serious and can take lives. Everyone just assumes, because it’s more well known and talked about, that the big C is the really bad one out there. But Cancer is not the only thing that kills! Many die from complications of Rheumatoid Disease and autoimmune diseases. The numbers would shock you. But because it’s not cancer, or you haven’t heard a lot about it, it can’t possibly be as deadly right? WRONG.

I am part of a very supportive group on Facebook for women suffering from Rheumatoid Arthritis/Disease. We were ripped apart about a month ago by a sickening argument over using the term chemotherapy when talking about some of our treatments. An alarming number of women were very negative about the fact that some of use the very name our doctors themselves speak. Angry that despite the fact that we are in fact on chemotherapy drugs, and go through many if not all the symptoms of dealing with it, we shouldn’t be allowed to say “I’m on chemotherapy”. As if cancer patients are the only ones with the right.

Here’s where I get angry. This isn’t the damned Pain Olympics. It’s not a competition on whom is more sick and who can have what treatment! We are all sick! Some of us dying! Have some fucking empathy!

My doctors, including my Rheumatologist, all refer to Remicade as a “chemotherapy drug”. Before starting a round of infusions, I am given the same list of side effects and ailment symptoms that any other patient on chemotherapy gets. Infusions, while helpful to my RD, are brutal on my body. They make me nauseated, I vomit, I sleep for hours with no real rested feeling in sight, I lose weight, my hair falls out, and my skin turns white and crepe-like. But it’s not cancer related, so it’s not really chemotherapy right? WRONG.

If it’s not really chemotherapy, then why has my Lymphoma and Cervical Cancer gone into remission after being on it? If it’s not chemotherapy, then why do I experience the same side effects as those with the big C? If it’s not chemotherapy, then why do ALL of my doctors use that term?

Because…. It IS Chemotherapy. It may not be the same doses as different diseases and illnesses, but it’s the same drug. It’s a drug that helps many people to live better lives, that they may not be able to have otherwise. It helps me. That’s all that matters. I have the right to call it what it is. It’s chemotherapy, and it’s saving my life.

So, today I will make my way down to my local clinic. I will be weighed, have my temperature taken, and put into a bed. I will be monitored like a hawk, because these are serious drugs. Four hours later I will emerge, exhausted beyond comparison to anything I’ve ever experienced, nauseated and yet hungry. I will go home where my mom will watch me for 24-48 hours to make sure I don’t get violently ill-it’s happened many times. I’ll barely keep my eyes open while I attempt a few bites of food and sips of water, before falling back into coma-like sleep for days. I’ll continue to lose weight, dark circles forming under my eyes, my skin thin as paper, more hair falling out with every shampoo and hair brush. But I’ll be closer to pain free than I ever have been.

I have Rheumatoid Disease, and I’m on chemotherapy.

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Size Does Matter 

For as long as I can remember, I’ve thought I was overweight. Literally, even as a child, I was aware that my tummy protruded just a little, that I had a round face, and that I didn’t have the same body as some of my friends. Of course, when you’re nine years old, things like weight don’t really ‘measure up’ in your world. As a nine year old, my day to day thoughts were mostly consumed by whether or not I was going to be able to collect the entire set of Looney Tunes mugs from KFC, or which of my friends my mom would let me have a slumber party with on the weekend. As a rule, nine year olds, or really any aged child for that matter, could care less about their weight. It doesn’t even register as a blip on the radar. The only way would be if someone were to tell you, to explain to you why it would even matter.

For me, this person  was my father. For as long as I have memories of him, those memories included him telling me I was overweight. Memories of us hiking when I was a kid, pointing out the reason I was tired and lightheaded was because I didn’t exercise enough, and that had to be the reason I needed to take breaks. Or telling me not to eat the bread that was set on the table at restaurants, because I already had a “belly”. Comments and situations like these were commonplace to my youth, even prompting me to beg my mom to let me stay home with her, instead of going to my dad’s every other weekend, per the divorce decree. When I was thirteen, my father took me aside and asked me if I was pregnant, because how else could I explain my fat stomach? This, as well as every other weight related comment, infuriated my mother, and bewildered me. Because the truth was, I was quite the gangly child.

Until I was ten years old, my mom and I lived in Makiki Heights, also known as Tantalus, an extinct cinder cone on the southern end of the Ko’olau Range on Oahu. Tantalus, was and still is a lush peak with thick rainforest, full of hiking trails, and dotted with older homes as well as more modern upscale estates. We rented a small apartment on the ground floor of a converted farm house, that sat on a large lot that was shared with the house of the owners. Growing up there was like living in my own personal Wonderland. Our garden/yard stretched far down the hill, and my neighbors yards were easily accessible if you didn’t mind squeezing through the wire fence. I was the epitome of a tomboy, and spent a lot of my free time running around, playing hide and seek, and getting into mischief with the three other kids I had as neighbors. So, to be called “fat” or “lazy” was incomprehensible to me.


I know what you’re thinking…. Geez, did she like pink… This is true. I did like pink. And cats. But I can guarantee you’re also thinking ” This kid was not overweight”.

I’d like to say as I grew older I started to fill out and lose the skinny, gangly look I had going on. But, alas, I was to maintain the “stringbean” look well into my teens. The comments never stopped either, so despite my slim figure, I always thought I was overweight. Because we tend to believe what people tell us. Not just our parents, but society as well. I grew up reading Cosmo Girl and Seventeen, just like every other hormonal teenaged girl in America. Those magazines told us what we should look like, what we should wear, how we should talk and act…and we believed every word. Why wouldn’t we? They printed it right? And all the celebrities and models were all bone thin and gorgeous, living the dream… Perfect house, perfect car, perfect wardrobe, perfect guy. The American Dream. Or at least what it looked like from a fifteen year olds point of view. And I was raised under the ideal of “Size Matters”. “You won’t get anything good in life if you’re fat.” “Beautiful people are winners.”

The funny thing is though, that once I hit eighteen, I grew out of that bullshit. I don’t know  exactly when it was that I stopped buying into the “skinny” hype. All I do know is that at some point I turned a corner, and I just didn’t care anymore. Could be around the time that I started to really enjoy my body. I grew breasts, and small as they were, they got the amount of attention I needed. My “stringbean” body went from straight up and down, to voluptuous curves. And somewhere in there, the shyness of my youth (when it came to boys), melted away. Suddenly, not only did I know I was attractive, I relished it. And while, the comments never stopped, I no longer needed validation from a parental figure to feel good about myself. If having wide hips and a round face meant that I was fat, well then, I guess size really didn’t matter, right?


 

God I hate it when he’s right…

Fast forward seventeen years. 

Here I am at thirty five years old. I’ve lived a very full life for my years. I’ve visited over 25 countries, and lived in at least 3. I’ve had a serious long-term relationship, attended university, won the lottery, and jumped out of an airplane (on purpose of course). And last but not least, I’ve been diagnosed with and suffer from a chronic and debilitating disease. A disease, that in the three and a half years since I was diagnosed, changed my body and mind in ways that I didn’t think was possible.

Three and a half years of being on the steroid that I once naively named “the arthritis cure”, having no idea the long term effects that it would wreak on my body. Turning my once beloved curves and perky breasts, into the prison of fat that I have been forced to become accustomed to. My reality is the woman that looks back at me in the mirror now. This unrecognizable woman, with her Cushingoid “Moon Face”, sunken in eyes rimmed with dark circles, and a body that looks  like she’s carrying triplets. 

I used to feel beautiful. I used to adore my looks. I was once a confident woman who thought she could have whatever she wanted, if she really wanted it. I was a boss. I knew exactly where my place was in the world. I was winning. 

This is where I hate how he was right. How society was right. I hate that I have to admit that. It pains me to say aloud that “Size Does Matter”. Because despite now having an invisible disease, nothing about me has physically changed, except for my weight. And yet I feel as if I’ve lost everything…

Since significantly gaining weight, I’ve lost the majority of my friends. Yes, I know you’re going to say “Well, they weren’t very good friends if they left you in your time of need, were they?” And that’s true, but it doesn’t mean that it doesn’t still hurt. Most of them just slowly  drifted away, becoming too busy, or too occupied with their own lives. I know this can’t all be blamed on appearances. A lot of this can also be attributed to just not wanting to be attached to the stigma of someone who is sick. But it’s hard not to draw the parallel.

Then there’s my dating life…  Since college, I have never gone longer than four months without a companion in my life. I’ve always had dates, or boyfriends, or “friends With benefits” or something. I’m really not as codependent as I sound, I promise. I’ve just always  enjoyed having a partner in crime, someone to share my life experiences with. And I’m sorry, but there is NO WAY IN HELL that my sixteen month drought doesn’t have to do with my increasing size!

Size Does Matter!

No matter that I am a strong and capable woman, or that I am an educated, well read intellectual. That I have traveled more extensively than most of my high school graduating class, and visited more countries than I can remember the names of. No matter that despite having a chronic illness that has caused me to have heart attacks, and through medications caused Osteoporosis and Lymphoma, I am still here standing tall. My disease has not defeated me. But maybe the stigma of my new size has. 

I don’t feel attractive anymore. I can’t honestly say “I’m beautiful”, because I no longer believe it. I feel fat. I see pictures of myself and I cringe. It literally looks like I’m pregnant with an entire litter of puppies. And the smiles from strangers have stopped. No longer does the cute waiter at the local diner give me free refills. I’m not the cute girl I used to be. And I try so hard to not let my looks define me as a person. But it’s hard to leave behind almost two decades of another way of life. This is not the woman I want to concede to. But as long as I’m on this drug, my doctors say it’s near impossible  to lose the weight. And I can’t get off the only drug that works. The only one that keeps me moving, mobile, alive.My reality is that this steroid is saving me. But what have I lost in return?

What have I lost in a world obsessed with the fact that Size Does Matter?

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.

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?

 

 

What my disease really took

I’m going to be 34 this year, in just a few short months.

Life right now is different than how I imagined it ten years ago.

Life is different than how I ever imagined it.

I don’t think anyone sits and wonders what their life would really be like if they were ever diagnosed with a debilitating disease. Sure, we make idle remarks about how hard it would be, but no one ever truly believes that it would happen to them, or a loved one.

But then it does and the world turns upside down and everything you knew or wanted fades away to a memory. It sits in a dusty picture frame on a forgotten shelf in the back of your mind along with all the other things you’ll never accomplish.

I used to entertain a lovely dream about meeting someone. Or maybe I already knew them. But in this dream time had stopped and we had realised our perfectness together, and so that all was right in the world. They thought I was the most beautiful creature, just as I thought they were as well. We would sit together in silence, holding hands, and smiling in the knowledge of how lucky we were that we had found the meaning of life.

Then when I got sick my dream started to change. Now it was that this person didn’t care that I was ill, and just loved me all the same. When they looked at me all the pain and suffering would melt away, and I would no longer be a girl who was sick. I would just be a girl. A girl who a boy fell in love with.

I don’t let myself think about that dream anymore, not even the newer one. I look in the mirror and see the face that everyone else sees, the face that he wouldn’t want to see. 45 pounds of steroid weight around my belly, legs, bottom, and face. A pain that never goes away, even when treated with a smile. An air of sadness that I can’t hide no matter how optimistic I act. Tight and shiny purple knuckles, legs covered in black and purple varicose veins, a body that rebels against itself at every turn. It’s not what anyone looks for in a mate, I know. I don’t let myself entertain the dream anymore.

Instead I keep my days full. I keep a tidy house, I cook and bake for friends who want it, I play with my cats and feel comforted by their never waning love and devotion. I feel happy for my friends who have found the life I yearn for but can’t have. I congratulate the news of new life, of new families, of love that was meant to last for someone else.

But I don’t let myself think about what I’ve lost. The part of my disease that no one realises is the worst. The loss that is never talked about because it hurts to wonder about something I can’t have.  The someone I will never have. What my disease really took. The one hope I’m not allowed to dream about. The life I lost when I got sick.

If you would like to help me stay on my feet and live happily and not homeless, please visit my campaign and make a donation to my fund. Thank you.

Christine Lilley’s Life Fund

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