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.
It’s nearing the end of 2016, and it seems like people are dropping like flies. Carrie Fisher died this week. Princess Leia, a superhero hero to one and all, one of the originals. She empowered women and girls alike, showing that we don’t need to be “saved”, and that we can have kickass adventures in life on our own. And just days later her mother, Debbie Reynolds, followed her demise. Just last week pop icon, George Michael, died as well. This was also the year that took Prince.
Superheroes these people were. But the real life kind. George Michael gave millions of his earnings to the needy. Prince donated time and money to foundations as well. You could say they all lived good and meaningful lives. Their deaths will all be remembered, their lives immortalized in history and our minds.
That’s what we do with famous people. We build them up to be larger than life.
I will always remember this poster I saw on a directory stand at a mall once… It’s said “You can probably name every single American Idol winner, but do you known the names of all of your child’s teachers?”
That’s so true isn’t it? We know totally useless information about famous people, probably more than their own families or themselves. Yet we don’t know much about each other, r important people in our lives.
I guess my point is that we dwell on things that don’t really matter. Things that aren’t important or necessary or helpful to our growth and intelligence. And while focusing on nonsense we forget about what’s really important, or whom.
You know what came to my mind when I saw that Princess Leia died? ‘Millions will remember her death, but I wonder how many would pay attention to mine?’
I’ve tried to be as honest as I can to friends and family about my disease. I try to explain my symptoms, or what the doctors say, or what we know. But either it goes in one ear and out the other, people don’t really believe it to be true, or its too intense to comprehend at all.
Mom knows. Or at least I think she has a pretty good grasp of the reality of the situation. Even more so since my therapist sat her down and really made her see. I can’t imagine what must have gone through her head that day. Was it like everyone else I tell? Incomprehension? Sudden, gripping fear? Denial?
It’s just like the Christmas season and Santa Claus… It’s all a myth, not really real right? Or the monster under my bed isn’t really there if I close my eyes real tight and pretend it’s not there… They’ll count to 1, 2, 3, and the boogie man is gone and all is right in the world again. Rheumatoid Disease doesn’t work that way…
You can’t pretend it doesn’t exist. And it won’t go away if you act like it’s not there. It will creep on you slowly, getting worse, and worse. Until one day you’ll look in the mirror and a poisoned and pale stranger looks back at you. Her hand are deformed, her back is hunched over, water and steroid weight clinging to her frame. She is not the beautiful woman who use to live in the mirror, and her weight won’t go away with diet and exercise and a can-do attitude.
Tonight Mom called me crying. She was sad for Debbie Reynolds. That she had to watch her daughter die before her, and that maybe the heartbreak of it, took her life as well. I think it was the first time my mom truly grasped the reality that she could outlive me. I’ve known for some time now. I’ve dealt with the depression of it, the sting of reality, the hard lump in my throat that I cannot swallow away. No parent should have to bury their child, adult or small. But that could be our reality.
I think the biggest issue patients face with Rheumatoid Disease is that people don’t understand how serious it can be. Everyone knows the word “cancer”, and they associate that with the deadliest kind of illness. But cancer isn’t the only thing that kills. And some autoimmune diseases are worse and kill quicker than cancer. Bet you didn’t know that did ya? Just like the Top 10 Billboard Artists, you can name them, but not diseases that kill.
Well here I am to inform you… Cancer isn’t the only thing that kills. And most of you didn’t even realize how severe my disease was until I started undergoing chemotherapy, which yes, helps other ailments besides cancer. My hair is falling out, I throw up all day long, I look and feel awful. Yes, my disease is as bad as some cancers.
What you don’t know, or don’t want to know, is that I’m on borrowed time. I’ve tried to tell you how sick I am. I’ve asked you to understand. I’ve explained again and again. I post articles, I do research. I ask you to believe. But the Kardashians are more entertaining than a misunderstood disease. Or the latest Star Wars movie, or a new car, or celebrity deaths in the news.
It’s hard to watch anyone die so young, especially one of our female superheroes. I’m not famous, but mortality is the same for me as I’m sure it was for Princess Leia. No one wants to die young. Im not a superhero, but it’s scary all the same. The difference is I won’t be mourned by millions. I only hope that if I do go early, my body would shed light on this awful disease that is intent on stealing my joy. That I could at least serve a purpose for those who come after me, and that a cure will one day be found.
You may think this is a bit morbid. But I guarantee you, it’s only the reality I’ve been trying to share. I wish people would see my disease for what it truly is. I wish people would listen when I explain how very ill I am. I wish they would believe my doctors when they say that I won’t live as long as my friends. I wish people could truly see and understand. And really listen and try to understand as much as they would pay attention to their fave tv series or movie star.
I may not be a superhero, but my health and body are not less important either. I’m trying to stay afloat in a world where I’m drowning in my disease. All I want is for others to acknowledge that I am a person too. A person dying from an incurable disease. I just want to know I have the love and support and understanding of others.
It’s a lonely reality when you know how sick you are, but it’s not as important as the latest blockbuster, or latest Prada bag, or the car you’ve always wanted. If you it’s a hard reality knowing exactly where you are on a priority list, and half the word sits above you.
I’m sick. Can I get an acknowledgement please?