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.
I recently had coffee with an old friend, and we talked a lot about past relationships. So much so, that I’ve been dwelling on the memories of my relationships for days now. Truthfully, I’m sneaking up on two weeks here. Two weeks of late night insomnia, where my mind instead of doing the nice thing and allowing me to sleep, decides to remind me of every single person I’ve ever dated. Truth be told, it’s a long list, and sleep doesn’t seem to be getting any closer.
When I was younger, you could have called me “boy crazy”. I had a lot of crushes. Although, I was also shy, not having my first kiss until I was fourteen years old. An embarrassing affair at a friends birthday party, with all of my comrades watching hungrily to see if I’d mess it up. I did. Turned my head the wrong way, smashed noses.
In time I got over the shyness, and in turn learned how to kiss, I suppose. With my seventeenth year came graduation from high school, my first real job, and college. I don’t quite know how or when it happened, but that year I blossomed. No longer did I feel like an ugly duckling, or shy as a mouse. I grew more confident of myself, and finally started to understand who I was as a person. That’s when I started to really date.
As the World Wide Web grew more and more popular, and I was gifted a computer from my father, I found myself drawn to chat rooms where I could flirt more easily, having a mask of anonymity to hide behind.
By the time I went to university in New Zealand, I’d found my stride in the dating world. My best friend Carmel and I used to constantly joke that this year or next year would be the year we would find boyfriends. And while we always gave it a laugh, and crushed on numerous, I don’t think we were ever fearful of not finding a life companion. It was only a matter of time.
Fast forward fourteen years, and here I am at thirty five, still single. Not that I haven’t dated. I’ve held two long term relationships in that time, as well as dated countless others. Do not misunderstand me, it’s not that I fear commitment. It’s as they say, I just haven’t found “the one”.
For the last two years I could have sworn it had to do with my illness. I mean I did have all my hormones turned off due to long term pain management medications. Over a year of no libido is a long time. But now that I’m off them, and my hormones and libido are back in check, I can’t really use that as an excuse. Perhaps it was my insecurities all along that kept me alone. Confidence shows, so of course insecurities and doubt can show as well. Throw in a good dose of self loathing due to weight gain, and you don’t really paint a pretty picture.
So here I was, in a coffee shop, listening to my old friend talk about how they couldn’t find anyone to date who was worth it. And it catapulted my mind into a wormhole of every relationship, crush, sexual encounter, and glance, I ever had with another. Suddenly I was up at night wondering where I had gone wrong, if I should have given one a chance, or if I had wasted time with another. Your mind sucks that way. Anytime you want to sleep, it’s always there to count on with sneaky little unspoken comments like “they could have been the one” or “should have given that guy a chance” or “too late now”.
I hate my mind at 3am.
But despite my mind attempting to screw my sleep pattern, I did learn something of all this. My disease was never keeping me back. It was me. And all those other relationships and crushes and scenarios, well they didn’t work out because they weren’t meant to. My heart was still on reserve for the one who was worth it.
We can’t judge our relationship statuses on the timing of others. My old friends dating life might not be working because he’s yet to meet his penguin (yes, I am using a Never Been Kissed reference, deal with it). Carmel found her soul mate eight years ago, and married him last year. It doesn’t mean that I will never find love. It just means that it’s not my time. Both of my sisters have married already, one being ten years younger than I. Doesn’t mean I won’t. And it doesn’t mean I will. But I’ve got to stop thinking negatively about dating.
People say you’ll meet someone when you’re ready. I don’t think I was ready before. But that was then, and this is now.
It’s been four years now that I’ve fought severe Rheumatoid Arthritis. Four years of pain, suffering, sleeplessness, weight gain, and judgement. Not only judgement from the outside world, at a disease that no one can see, but also judgement from myself.
Despite my doctors and nutritionists telling me for YEARS that the weight gain wasn’t my fault, that it was the steroids keeping me mobile, I’ve hated the weight that has sat on my body. Being six feet tall has had its advantages though, the weight distributed evenly, and I was never really obese looking. Even though doctors told me I was toeing that obesity line. My long legs and torso helped slim me down, and at my heaviest, I really wasn’t that bad. Or at least that’s what everyone told me.
I, on the other hand, hated it. Gone were my hip bones, and curvy figure, now encompassed in too much flesh. Gone were my high cheek bones and smooth skin. My face now had taken on the characteristic of Prednisone called Cushingoid, or “moon face”. My eyes were sunken in and dark, my chin now had a friend to play with, and my hair hung lifelessly to my shoulders. I did not like the girl in the mirror. She was a stranger, an impostor, and yet there was nothing I could do. Not that I didn’t try.
I spent three years dieting, trying every new fad and hippie trick, trying to lose the steroid weight. I almost gave up hope when my Neurologist told me I wouldn’t lose it until I stopped taking the steroids altogether. Well, shit. I couldn’t do that yet. They were keeping me alive, up and moving, and out of bed, for the most part. I started to hate the girl in the mirror. I blamed her for having to buy bigger clothes. I blamed her for how I could never quite look right. Clothes just didn’t fit how I wanted them to, and no matter how much makeup I put on, I couldn’t lose the dark circles under my eyes. That bitch.
Then four months ago my medications changed again, and I was put on a form of chemotherapy. Man, were they not kidding with the warnings of nausea and vomiting. I spent the better part of two months puking. And when I wasn’t puking, I certainly wasn’t eating. I lost my taste buds and the desire to eat altogether. And the pounds started to melt away. But that wasn’t the healthy way to do it.
Eventually the nausea and vomiting stopped. Well, for the most part. My taste buds came back and I enjoyed food again. But my stomach had shrunk. So now I could only eat very little at a time, and only need one or two meals a day to sustain me. My weight continued to drop. I knew it was happening because my jeans started to get really loose. I was using holes on my belts that had never been touched before. For some reason though, I still couldn’t recognize the girl in the mirror.
I knew I was changing back to my original self. But so much time had passed that despite the fact that I’d lost 52lbs, I couldn’t see it. I started to buy smaller clothes, opting to wear leggings more because they were so versatile (plus I loved that I finally looked good in them). I started to enjoy clothing shopping again, although I would constantly pick out sizes much too large for me, because I still couldn’t comprehend the weight loss.
I stared at that girl in the mirror. Was I in there? I couldn’t see myself, but others could. My mom kept commenting on how skinny and slim I looked. But I was almost defensive about it. There was nothing wrong with being bigger, I’d say. But the truth of the matter was that I not longer was.
The weight continues to melt off my frame, and I’m starting to see my hip bones again, and my belly doesn’t obstruct the view of my feet. My face has slimmed down, and while I still have dark circles, they have faded and I’ve found makeup that covers them.
But I still don’t recognize that girl in the mirror. I know she is me, but she is not the me that I see.
March 29, 2017
This has been a very turbulent year for me so far. I have uprooted my entire life for the search of something better. Something healthier.
For those of us that live with terminal and chronic diseases, change does not come easy. I learned this the hard way. I am still learning.
When I made the colossal decision to go to New Zealand in search of better (cheaper) healthcare, I’m not sure if I really understood the change I was undertaking. See, I’ve had the travel bug all my life, and I’ve bounced from state to state, and country to country, more times than can be counted on two hands. So a giant exploratory adventure to New Zealand didn’t seem so giant at the time I put thought into action. In fact, I viewed it as one of my more minor adventures. I mean, I was already a NZ citizen, and had lived there for over ten years sporadically throughout my life.
What I didn’t take into consideration, and perhaps I should have, was that I hadn’t been back in NZ since 2004. That’s 13 years! I’d never been away for so long before, and I am embarrassed to admit that I didn’t even consider that it might be a culture shock after all this time. I was so used to moving around so much in the United States, that it truly did not occur to me that going to a country that I hadn’t stepped foot on in 13 years, might have changed in my absence.
It was really hard when I first got here. And I will be the first to admit that I immediately (I’m talking within the first week), wondered if coming here had been a mistake. Maybe I was so excited for change that I hadn’t really taken the time to think about what I was doing. Medical and housing bills were piling up in Hawaii, I couldn’t afford my apartment any longer, I couldn’t even afford my chemotherapy. The one thing that was starting to really work out for me, was bankrupting me faster than I could snap my fingers. Well, I can’t actually snap my fingers these days because of the arthritis, but you get the picture…
I flew to New Zealand like a song whistled in the wind. It had been so easy. Maybe too easy? I’d gotten a stand-by pass from my Dad, a perk from his days as a pilot, so my ticket had been less that $200. Unheard of for international travel. Despite my chronic disease, I’d packed up my entire apartment basically on my own, selling what I could, and giving away the rest. The only devastating part about leaving Hawaii was having to re-home my cats. My beautiful fur babies that had been with me since the beginning. I won’t go into details as this will turn into twenty mins of sobbing over the heartbreak of it. But they were adopted by a couple and their 12 year old girl, who swore she loved them a hundred times over. Once they were gone, there was nothing left for me in Hawaii anyways.
Well, not entirely true. I was leaving behind family and friends, a booming online business, and the best medical team a chronically ill patient could ever ask for. You may wonder why that wasn’t enough for me to stay. I can’t explain it. Sometimes you just wake up and know there is more for you somewhere else. More to see, more to do, more to experience. At 35, I am single and unmarried, I have no children (save my fur babies), and no bricks and mortar that by am attached to. With each passing day my disease progresses, breaking through the walls my medicine tries to put up to slow it down. A year ago, my doctors gave me a time frame for my lifespan. At 34, I was told how many more years I could expect to live. It was not a number that I was happy with. In fact, it spiraled me down in a deep depression, that still haunts me now and then. At my age, most people aren’t even half way through their life! So, to be told I could be close to the end was like having a brick flung at my face, narrowly dodging it, only to be hit by a freight train.
My point, if all good things must come to an end, maybe I should see more and do more before that day gets here.
But lo and behold, chemotherapy was finally starting to work. I had pep in my step, energy I’d forgotten existed, and my pain started to melt away. If only it wasn’t so ridiculously expensive to get treatment in the United States. (I’ll save my deep and profound anger at Big Pharma for another day.) I had remembered that when I lived in New Zealand when I was younger, that their public healthcare system had been top notch. So with a lot of research (including staring at my computer screen til my eyeballs felt like sandpaper), and some phone calls to family and friends in NZ, I made the decision to check it out.
As stated, I moved out of my apartment, put my beloved baking tools in storage (no way in hell was I parting with my Williams & Sonoma pie plate), packed two suitcases (who made that lame rule??), and set off for another life affirming adventure. Right? Well, jury is still out. Culture shock doesn’t even begin to describe what was waiting for me. I never thought of myself in terms of “old dog/new tricks” but, wow, I was not expecting such a big change. Or maybe it was that I had changed. I’d grown older, become resistant to change, or just not as easily accepting of the new.
Medical services are different here. So many hoops to jump through, and months of agonizing waiting that seems ridiculous. If someone was truly ill in the United States they would not have to wait very long for medical care. Maybe a month, but certainly not longer if they were in critical condition. It’s not like that here. “Everything in its own time” seems to be a popular phrase here, only its that phrase on crack. I imagine a lot of people probably go undiagnosed due to the snail pace of the public healthcare system here. It seems that it’s very important to have private insurance if you want to get anything done. Which is what I had to resort to. After many calls, my mom was able to get me an appointment with a private rheumatologist, only three weeks after my arrival. I had to pay out of pocket for that appointment, but it was necessary to get the ball rolling. Had we not, I could have been waiting upward of 4-5 months for an appointment through the public system. Without necessary medications, I could have easily been hospitalized by that point. Through the appt with the new Dr, I was able to find out I could get my chemotherapy again with a few less hoops to jump through than most. Thankfully the letters from my Hawaii medical team seemed to do the trick.
So, New Zealand wasn’t quite all I thought it to be. Not an easy fix, like my mind had hoped for. Not filled with fluffy sheep, chocolate, and the best cheese and ice cream ever. Well, not true, it does have all those things. Don’t even get me started on Orange Chocolate Chip Ice Cream. Drool…. And maybe I did make a rash decision to move here without all the facts. Or maybe I wouldn’t have found out those facts til I got here. The point is I made a decision, and so far it’s working. It’s been hard, yes. I miss the privacy of my own apartment, the comfort of being able to walk naked from your bedroom to bathroom at 3am. Having my own kitchen where I can whip up my favorite comfort foods whenever I want them. I miss sleeping with my fur babies, their cuddly bodies warming my head and feet. I miss being able to walk out of my apartment and catch a bus to a friend’s house, or to the local movie theatre for $6 Tuesdays.
But change is good right?
I had an interesting revelation recently about karma. See, for the longest time I thought that karma wasn’t on my side because of the chronic illness I suffer from. I figured things surely weren’t going my way especially if I was in constant suffering from this terminal disease. I’d hear other people complaining about their lives and I admit that it really frustrated me. Not because they aren’t deserving of complaints, no judgments here, but because they sounded so minor in my mind to what I was feeling. And that’s of course wrong. I shouldn’t judge others lives as much as they shouldn’t judge mine. I wasn’t mad at them, I was mad at my disease.
I guess for a long time I felt cheated by life. Cheated by the world, for having this incurable pain that I had no control over. But then I had this great epiphany a couple of weeks ago. It was just after receiving an amazing gift from a friend. I had unfortunately just cracked one of my teeth, while eating boneless chicken, no less. I was desolate because I knew I didn’t have enough money to go to the dentist, let alone go and get a root canal and a crown, which surely would’ve been the case. I was super depressed and had posted on Facebook how frustrated I was that I was too broke to go to a dentist. And amazingly an acquaintance of mine reached out through a personal message and offered to pay for a dental visit for me.
I was floored. Having only one other time experienced such generosity, I was shocked.
Despite my protests, my friend insisted I go to the dentist the next day, which I did. And very unhappily came to find that it was not one tooth, but two! Could the news be any worse? Yes. It would cost close to $4000 to fix my teeth. I was even more depressed by that point. So I told the dental assistant to call my friend, whom would be paying for the consultation, and he would give her a credit card over the phone. While she went off to collect her few hundred, I sat trying to comprehend how I could come up with all that money for a problem that was a pretty big issue. They were my front bottom teeth, and it wasn’t something I could ignore. Imagine my giant surprise when the dental assistant returned and told me my friend had not only paid for the consultation, but also for my two root canals AND crowns. Almost $4000 in dental surgery and reconstruction!
I was speechless. After agreeing to come back later that afternoon for the dental surgery, I contacted my friend, worried at how much money he had spent. But he was so nice! Told me he was glad to help me, having known how much I needed it. Not only did he know I would never be able to pay him back, he didn’t even ask for me to. I could not believe the generosity of someone I didn’t know that well.
That night, as I rested at home with a swollen and numb jaw, I also remembered the generosity of another person. Someone who had read my blog and sought me out because of it. A very generous person who treated my mom and I to an amazing meal at their restaurant, just as a way to say “I care”. Two people who barely knew me, but understood my struggle, my pain, had reached out and given amazing support in ways I didn’t know could happen to people like me.
And of course I have received support in many other ways, from many other people as well. Friends who have bought me groceries when I’ve run out of food stamps, or couldnt get to the store. Friends who’ve paid my phone bill because all I could afford was rent. People who didn’t even know me and donated to my fund to help me have a home. Family members who have helped get me to the er and the doctors office. Family that took care of my cats when I was ill or away. As well as two military families that took me in after I couldn’t work anymore. And all of this done selflessly, with no expectation of payback, or strings.
I have been very very lucky. I realize this now. All this time I thought I had bad karma because of my disease. That I was being punished for any wrong doings I’ve done in my life. No. How very wrong I was. My karma is outstanding. How else to explain why so many amazing people do amazing things for me in my life? How else to explain what wonderful people I have around me, who dedicate themselves to supporting and loving me? If I were a bad person, people would not help me as they do. You don’t give your generosity to someone you think isn’t worthy of it. Not generosity like I’ve received.
Silly me. Bad karma? No no no.
My karma is outstanding. What a wonderful thing to behold. And thank you to all of the people in my life who helped me realize this.
Inigo Montoya shared this line with us in the cult classic The Princess Bride, one of my favorite and also least favorite movies. You may wonder how someone can love and hate a movie at the same time, but it’s not much different than how we love and hate other parts of our lives… I love tomato soup but hate marinara sauce. I love the beach but hate the sand.
For me, this line is indicative of how I feel when people offer support or help, but don’t follow through on the promise. It’s in fact one of my biggest pet peeves. The best memory I have of this annoying occurrence is through the actions of a certain ex-boyfriend of mine. He would constantly make promises to me, and then never follow through. For example, on one Valentine’s Day, he told me that my gift was that he wanted to take me to this old black & white theatre in town that played old movies, kind of like an old fashioned romantic date night. I was overjoyed by this idea, reveling in the thought of how romantic my man was. I told all my friends about the lovely date he proposed, finding such satisfaction in the idea of my “gift”. But then time passed, and he never initiated the actual date he had told me about. This was when I first realized that he was one of those people that thought that stating the idea/plan/date was enough, and that initiation of said idea didn’t need to happen, so long as he felt generous enough for just offering. God, that got old real quick…
I actually use this irritating ploy as a way of gauging the authenticity of people I come across now. I no longer accept offers at face value, concluding that an offer isn’t real until followed through on. Alas, since falling ill four years ago, there is no offer made more than the promise of support. And this is where I want to invoke Inigo Montoya every time.
What exactly is your biggest pet peeve, you may ask? Hearing this:
“Please don’t ever hesitate to call me if you need help.”
“I could help drive you to the doctors office if you ever need.”
“Call me if you need help picking up groceries or running errands.”
There are more versions of these statements, but I think you get the picture. But they are always, always followed by “It’s no problem at all, I’m just glad I can help.”
Now I know what you’re thinking, “This girl is ungrateful. These people are just trying to help her, and she’s complaining.” Oh, if only that were true, but if it were, I wouldn’t be regaling you with this story now would I?
In the early days of my disease, I was always so grateful to hear these promises of support. They made me feel like I wasn’t alone, that I had so many people that I could count on. That is, until I attempted to collect on the offers…
Now at first, I thought I must always be catching people at the wrong time. That of course must have been the reason they turned me away. So I started to ask for help here and there when I thought the time was more convenient. But even then, my request to take people up on their initial offers of support, were often met with short responses in clipped agitated tones. Or even worse, comments dripping in disdain that sounded like they were answering a smelly homeless person, asking for an extra bucks change, as opposed to me, a friend they’d known for quite some time.
Like I said, it took me awhile…
Eventually I figured it out, these people were just like my ex-boyfriend, and they fed hungrily on the feeling of being a benefactor from just the offering of help. For them, the offer alone was enough to make them feel like they had done a good deed. They’d offered someone in need their help, and that in turn made them feel generous and kind. Hurtling their karma in the right direction, and allowing them to feel philanthropic. But if the person in question turned around to collect on that offer, instantly they would feel annoyed and pressured, irritated that they would have to now make time to do something that they themselves offered in the first place. This annoyance that they felt entitled to feel, could then allow them to take a step back from the friendship. They could now tell themselves that they had been generous, and that it was being taken advantage of. While in reality, they hadn’t done anything but make themselves appear petty and untrustworthy.
Now I’m not saying all people are like this. I do have wonderfully supportive people in my life. People who have gone above and beyond to help me, to support me, to love me. I am eternally grateful for their kindness. Although, I do find it amusing that the most generous people are often not whom you might normally expect. But that’s okay. Their generosity and support make me realise more now than ever, that sometimes the family that chooses you, the ones that come from all walks of life, are the ones that make the most impact in yours.
But on the path of never ending life lessons, don’t ever assume “I can” means “I will”.
If I’m in pain all the time, you may ask is it even worth it, to do the things that I do.
If it’s so painful to run errands, pick up your meds, and go grocery shopping, why do you do it?
If you’re in so much pain, then why get dressed and put make up on, and go out into the world, why not just stay home so that you can sleep and sleep?
If the sickness is as bad as you say, then why bother getting up every day, why don’t you just stay in bed?
If you’re in as much pain as you say, why are you not in a hospital, why aren’t people like you talking about how much pain they are in, and why have we only heard about it from you?
If your disease causes as much weight gain as you say, how come we haven’t seen in it others?
If is not the question you should be asking.
Because IF you truly listened, watched, and heard, you would know the answers to your questions.
That if I didn’t force myself out of bed and do the things I do, I’d become a prisoner inside my body. That if I stayed in bed I would get sicker and sicker as hope would be lost. That I’ve been to the hospital several times already, don’t you remember when I told you? That there are thousands of people around you every day that suffer from sickness, pain, and weight gain due to illness, but that all you see is fat, and so you judge without question.
If you really wanted to help instead of judging, you would look at me with eyes wide open, and see my reality for what it is, instead of judging me for something you refuse to understand.
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?