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?
I wish you would see the real me, the me that no one sees. I wish you could see through the denial of what I have in your mind. I wish you would see the me that struggles every day. I wish you woul…
Source: I wish you would
I wish you would see the real me, the me that no one sees.
I wish you could see through the denial of what I have in your mind.
I wish you would see the me that struggles every day.
I wish you would see how hard it is for me to maintain this vision of wellness that you expect me to project.
I wish you could see how hard it is for me to live with this pain day in and day out.
I wish you could see your own fear that you push onto me when you tell me to get over it or just push through, like it’s just a bad day and not the disease that is killing me.
I wish you would believe me when I tell you the truth of what is happening to me, and what my doctors are telling me.
I wish you could see that I need you more than just in name, in title. That I need you to actually be a parent, a supporter, a friend.
I wish you would stop being passive aggressive when I tell you I don’t feel well, and not brush it off like I’m being lazy or dramatic or not willing to give my all.
I wish you would help me financially as much as you help yourself.
I wish just once you would ask me if I need help, if there’s anything you could do for me.
I wish you would see how scared I am.
I wish you would see how frail I am.
I wish you could see that deep down inside I’m just a girl who never asked for this, never wanted this.
I wish you would accept me for who I am, all of me.
I wish you could accept that even though my body has changed I’m still me, and that I didn’t want to look like this. It was out of my control.
I wish you could see past the weight gain, see past the medications, and the sickness, and just love me.
I wish you would love me as much as you love everyone else, and treat me as an equal, not an outcast.
I wish you would stop pretending to the world how great you are, how supportive you are, and show how really cold you are.
I wish you would tell everyone that I asked you for help and that you told me I didn’t earn it.
I wish you would tell everyone the truth, that you have not given me even 10% of the support I really need, even though you are one of the people I need it the most from.
I wish you would love me like everyone thinks you do, how you tell everyone you do. I wish it didn’t feel like a lie.
I wish you knew how hard it was for me to get out of bed today, how painful it was just to grip the sheets and pull back the covers.
I wish you could understand how hard it was to have someone help dress me, how hard it is as a 35 year old woman, to have someone else help me put my underwear on.
I wish you could see how I struggle to do even the simplest things, like pour myself a glass of water, or even lift the glass to my lips.
I wish you could see the real me, the one that is in pain every day and just wants this to end.
I wish you would treat me with the love and respect that I deserve, and give me the support you tell everyone you give, the support you have deluded yourself into thinking you give.
I wish everyone saw the truth of what is happening to me. I wish people truly understood and believed me when I tell them I am dying. I am truly dying. It could be a year, it could be ten. But the truth is I will probably go before almost everyone I know, including my parents.
I wish you would all just understand how hard that is for me to process. How hard I struggle with my mortality. How hard I struggle with everything.
I wish you all knew how little I have in this world. How I am close to bankruptcy, that I have bills piling up, and that I’m about to lose the roof over my head. I wish you could understand how many people I have in my life that could change my circumstances in a minute, keep me from homelessness, truly take care of me, but choose to do nothing. People who lie and tell everyone how supportive they are of me and understand how ill I am but would rather spend money on trips, shopping, eating out, and material things. If only they could look inside themselves and see that if they sacrificed one present to themselves, I could be housed for a year, or for life.
I wish you could understand how little and terrible they make me feel when I ask for even the smallest amount of help. I wish you could understand that they told me I didn’t earn their love or their help, and that they don’t need to take care of me.
I wish you could understand that this is my reality. It has been since before I was sick. That this is what I’ve dealt with for years.
I wish I wasn’t dying. I wish I could be happy. I wish the world I knew wasn’t the world I live in.
I wish a lot of things.
I’d been sitting in the blue squishy armchair for what felt like an hour, though more likely it had only been fifteen minutes. There are only four of those armchairs, and they are coveted, being the only actual comfortable chairs in my pain management clinic’s waiting room. The rest of the chairs in the room are made of black metal and hard gray cushioning, and no matter what length of time you sit in them, be it an hour or only five minutes, you will always always get up in pain and discomfort.
Today the chairs were almost empty, and I got my pick of all four, choosing the largest and squishiest on the far right near the door. It was late in the afternoon, much later than I’m usually there, and most of the patients had already been seen. I was mentally kicking myself for agreeing to an appointment that late, usually at that time I’d have been home napping. God, I wish I was napping.
Today’s outing was a mistake, I knew this now. I knew it when I was on the crowded bus making my way here. I knew it while traversing the five blocks from the bus stop to the office building complex, especially once it started to rain. I knew it once the wind snapped back my once sturdy umbrella, rendering it broken and useless. See, the problem was that I’ve been sick for days. No, not my usual sickness of arthritis pain and fatigue, though it was included. But actual sickness, like a cold, or in my case a sore throat with fever. I’d spent the whole weekend in bed, barely making it up to use the bathroom and make cups or tea, I couldn’t even remember when I’d eaten last. I was feeling so shitty yesterday that I’d had to cancel/reschedule three appointments, because I physically didn’t have enough energy to put clothes on, let alone catch the bus downtown. Usually, I have help from my caretaker on days like yesterday… But a few weeks ago I’d insisted that they take a vacation from looking after me, assuring them that I’d be fine. I mean what could go wrong in one week right?
…..sometimes I wonder if I jinx myself when bargaining with fate like that.
On a normal day, I would have known better than to leave my apartment feeling so bad. But today was a special day, not one that I could skip. See, today was when I got my prescription for my pain management medications. Since they are severely controlled substances, you can only get a 30 day prescription at a time. My clock had been ticking down, and I have only two days worth of medication left in my medicine cabinet. I could be on my deathbed and I wouldn’t miss that appointment. It’s as important as paying rent on time.
So today, a day where I’d woken up feeling like I was flattened by a steamroller in my sleep, I left my house to travel thirty-five minutes downtown and sit in that room, in the blue armchair, waiting. Dripping wet from getting caught in the rain with a now broken umbrella, waiting. Shivering cold in the office’s icy air conditioning, waiting.
Ever heard of Spoon Theory? It’s a theory that was brought to life by a woman named Christine Miserandino, whom has lupus. Christine tells a story to her friend, explaining what life is like living with lupus, but it really could be an explanation for a myriad of chronic diseases, including my Rheumatoid Disease. To truly understand what we go through, give it a read here. It’s the best description of what I go through on a day to day basis and you’ll need it to understand the rest of my writing.
Any day that I wake up sick, or in the middle of an active flare, or exhausted from a restless sleep, is a day I wake up on borrowed time. It’s waking up with half the spoons of a regular day. Though for me, there really is no “regular” day, because every day I wake up I’m in some measure of pain. Today, was an especially bad day. By the time I’d reached the pain management clinic offices, I didn’t have many spoons left, maybe three, four if I got lucky. In fact, I was pretty worried about making it home at all.
After what seemed like an extraordinary amount of time, I was finally called in to my doctors office. I’d assumed today would be like any other day, just the regular picking up of my script, ten to fifteen minutes top. Alas, it was not to be. I was met by a new attending nurse, whom told me I’d have to give a urine sample before getting my prescription. This was new. I’d never been asked to do that in the three years I’d attended this office. To be honest, I was fairly insulted. This test was to insure I’d been taking my pain medications, and not doing something more sinister like selling them on the streets. Did they really think after all these years of my being on intense pain medications, medications that not only kept me mobile but also alive, that I’d just throw it away for some cash? Ugh…
By the time I left the clinic it was an hour later than I’d expected. It was also unfortunately still raining. It was going to be dark in just under an hour, and I was exasperated because I still needed to stop by my local pharmacy and pick up another prescription that I was already out of. Had I not been so sick over the weekend I would have picked it up already, but I’d been in too much pain to leave the house. Unfortunately making it so that I had to pick it up today after my appointment. This could have already been taken care of, and I could have been on my way home by now had that stupid new nurse not made me take that ridiculous urine test.
It took what little energy I had left to walk those five blocks back to the bus stop. The rain slowed me down, my broken umbrella doing little to shield me from the wet weather. I was waiting at the crosswalk when my bus rolled past. No no no. No. I hurried across the street, trying to be careful not to slip ( I did not need to deal with a broken bone of all things right now), and put up my hand trying to signal the bus not to leave. He was right there. But he left. When I was not two feet from the back of the bus, where I’m sure he could see me in his rearview. Thanks bus driver. Thanks.
By the time the next bus to my suburb came, it was dark and still raining.
Pneumonia. I was surely going to get pneumonia.
I could hear my moms voice in my head telling me to catch an Uber or Lyft, and man would I have loved to, had I enough money in my bank account to pay for it. But tomorrow was rent day. I didn’t even have enough money to pay my gas or electric, or my internet and phone. Hell, I didn’t even have enough money to supplement my $90 monthly food stamp allowance. I’d just gone two days without gas, which meant no hot water and no ability to cook food. Ride shares were a luxury I couldn’t afford.
The bus was packed, it being rush hour and all, and the floors were slick from the rain. I had to stand for the first ten minutes, before finally securing a seat in the sideways facing disability section in front. I don’t usually like sitting there, as riding sideways makes me nauseated, but beggars can’t be choosers. I was beyond exhausted. I maybe had one to two spoons left, and if I didn’t really need to pick up that prescription I would have caught that bus right to my street. But I knew I couldn’t live without my medicine. Waking up without it would make things so terribly worse.
Once at my destination I bought a bottle of water, drinking half of it down before continuing to the pharmacy counter, hoping to alleviate the nausea I inevitably got from the bus ride.The liquid revitalized me just enough to stand in the long line that had accumulated for those “picking up”. I paid for my prescriptions, dropped off the new ones, and headed back to the bus stop, elated that my day was so close to the end. I allowed myself to fantasize about a hot shower and a cup of Irish breakfast tea.
As I watched my bus drive past me as I turned the corner, an offer of a million dollars couldn’t have stopped the tears from falling. I was so tired. So this is what being stuck out in the world without spoons felt like… I don’t even remember sitting down, but I must have. I wearily pulled out my phone, looked at the bus app, and was relieved to see that three buses were scheduled to arrive in the next fifteen minutes. I could wait fifteen minutes. And then I would be home, under that hot shower, and then snuggled up in bed with my cats and that hot cup of tea. It sounded like heaven at this point.
I waited. And I waited. After thirty minutes no tears fell. I don’t think I had the energy left for any type of emotion. I stared down the dark street, knowing that all the way down there, six blocks away, was my warm and dry apartment. I don’t know if I borrowed spoons from tomorrow, or just willed myself with the raw human need to not die on that bench, but I got up and started to put one foot in front of the other.
I don’t know how long it took me to walk home from that bus stop. On a good day, I could traverse those six blocks in about ten mins. But today was not a good day. I don’t even remember the actual walking. Just one foot in front of the other. My wet shoes making squishing noises with each step; I know at some point my phone beeped. It was a text from my mom, telling me she had a cold. I responded that I was walking, and put my phone away.
The next thing I remember was sitting on my bed, wrapped in a towel, still warm from the shower. My hot water kettle chimed that it was ready. My phone was beeping. My mom was telling me how sick she had felt all day. All I can remember is feeling so profoundly jealous of the people in the world who have someone to look after them. Someone to tuck them into warm beds, bring them cups of hot tea, and medicine.
I looked back on today, realizing my new reality, and cringed. A reality I had actually agreed to.
“Go and live your life”, I’d said.
“I’ll be fine on my own, I’m sure.”
In fact I was so sure my disease couldn’t get any worse. I’d seen it all this year. Hospitalized for reoccurring Pericarditis, multiple ER trips for violent pain flares, chemotherapy, lymphoma, menopause, and now the new sleep apnea diagnosis… Surely it wasn’t going to get worse, right? Why do I always underestimate my disease? Why?
And then in the first week I attempt to do this on my own, to show everyone who’s been pushing from the beginning, saying “Why can’t she look after herself?” or “She’s an adult, why does she need help?” or “She’ll be fine on her own”
Then…. This happens.
Have I shown you the truth yet? Are you ready to accept that my disease isn’t going away? Are you finally ready to open your eyes and see that not only will this affect me for life, but that it will just get worse and worse? That I need support? And not from some nurse that checks in with a daily phone call, but someone who physically checks in on me, to make sure I wake up every day. To make sure that days like today never happen again. Someone who helps me to my doctors offices, or insures I get my prescriptions filled on time, and to see that I’m eating something when my flares keep me bedridden for days on end. Someone who helps me keep a roof over my head, and food in my fridge, and my gas from being turned off.
Who is that person for those of us who have no husbands or wives, no long-term partners who can watch over us? Who is that person when a family member denies your disease exists? Who is that person when the one person that does look after you has a partner who doesn’t understand this, nor do they want to?
Who is that person when you’re facing being alone indefinitely?
Who am I going to turn to the next time I run out of spoons and I’m not just a few blocks from home?
Who am I going to turn to?
Who is left when the spoons run out?
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’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?
As a gal living with Rheumatoid Disease, I face challenges day to day, often those challenges being the correction of what people think I have, as opposed to what I actually have. I know, I know, I probably sound like a broken record half of the time, but I wouldn’t have to if people would just LISTEN the first time round. So here I am today, sharing the differences again… Hopefully this time is the charm…
1) “Oh, you have Rheumatoid Arthritis? Everyone has that. I think I might have it.”
No. Correction: “Everyone” does not have that. And trust me when I say, if you have it, you would know.
* First off, the main difference between Rheumatoid Arthritis and Osteoarthritis, which is a much more common variety of arthritis, is the symptoms. Osteoarthritis is caused by the eventual breakdown of joints over time, which is why it’s so common in the elderly. Rheumatoid Arthritis is an autoimmune disease where your body’s immune system actually attacks its own joints. These are two different types of arthritis, that provide two very different outcomes on the body.
Osteoarthritis is the most common form of arthritis. When most people are referring to arthritis, osteoarthritis is typically the form they are talking about. While Osteoarthritis is known to affect the elderly the most, it can happen in younger ages as well. It’s based on the wear and tear of the cartilage of your joints, so weight gain, joint injury, work that engages using your joints often, and genetics, can also play a role in getting this form of Arthritis.
Rheumatoid Arthritis, or Rheumatoid Disease, is more common in women, even more so after the age of 40. But it’s not only limited to that age, obviously, and also is seen in younger children, known as Juvenile Rheumatoid Arthritis. Rheumatoid Arthritis is an autoimmune disease that causes pain, stiffness, and swelling in the joints. The most commonly affected joints are the hands, wrists, feet, knees, elbows, ankles, and shoulders. But this disease is a double edged sword, as it not only causes pain through the inflammation of those joints, but also affects your body’s organs and immune system as well.
So unlike Osteoarthritis, which causes pain in the joints, and stiffness in movements, Rheumatoid Disease also attacks the body. So on top of pain, stiffness, swelling, and decreased mobility over time, patients with severe Rheumatoid Arthritis also have to deal with decreased immune systems, that make us vulnerable to life threatening illnesses. Our disease also opens us up to bone thinning, which can in turn lead us to Osteoporosis, another disease that I now have because of RA. I have to administer a daily injection into my belly with a sharp, painful needle, to deliver a medication called Forteo into my blood stream. Every single day. And, yes, it does hurt.
Patients can also get heart disease, stroke, several forms of cancer, lung problems, tuberculosis, anemia, and vasculitis, just to name a few. As well as host a laundry list of other issues including, but not limited to, depression and anxiety disorders.
So, please, before you open your mouth to state that “everyone ” has my disease, or in fact that you have it too, when you don’t, just think about the truth of your statement. Because blurting out incorrect facts to a person with a legitimate disease is beyond frustrating, and tends to make you look the fool.
2) If you exercised more, you wouldn’t be sick.
You know how people cringe when they hear certain sounds? Like nails on a chalkboard, or a metal chair being scraped back on a hard floor? Sounds like that tend to pull an involuntary response from us, a shudder, or a full body tense-up, that leaves us uncomfortable and stiff. Well, that tends to happen to me anytime I hear the phrases:
“If you exercised more you’d…
“If you were vegan or vegetarian, I bet your disease would go away…
“Healthy people don’t get sick, so you’re just living unhealthy…
Remember how I just talked about not wanting you to look the fool? Well, you might wanna go back and read through that again. First of all, there are THOUSANDS of people who have thought they were living completely healthy, active lives, who’ve turned around one day, and (BAM) they have cancer! In fact I just caught an Uber ride-share a few weeks ago, and my driver told me his sister had just passed away from stage 4 pancreatic cancer. He was of course devastated, but even more so because his sister had no idea she was sick until the very end! She lived an extremely healthy and active lifestyle, taking part in countless marathons and triathlons, and was funnily enough, vegan.
I understand that it is very trendy right now to be vegan, gluten free, vegetarian/pescetarian, wheat free, raw diet, green living, wonder hippies. I’ve seen the articles, read the magazines, watched the reality shows. I’ve seen the celebrities with their mats in one hand, being photographed on the way to Bikram yoga, with their kale chia smoothies in the other. Everyone is skinny and toned and tanned. Well, I might be too if I had a hundred thousand dollars a year to spend on a personal trainer, personal chef/nutritionist/dietician, have a sun bed in my home gym, and could afford the new Kate Hudson clothing line. Then again, maybe I couldn’t.
I’ve been sick for almost four years now. But truth be told, in that first year, diet and exercise wasn’t a large concern for me. I was still fairly active, going on walks and hikes, and weekend trips to the beach happened more often than not. But I was still eating fast food, and junk food, and basically whatever I wanted. Prednisone had not yet affected my weight, like I had been warned it would, and I was still fairly slim, and curvy.
It wasn’t until year two, and now three, that my weight drastically changed. I developed Cushingoid, also referred to as Moon Face, which meant my cheeks and chin ballooned out, causing my eyes to look sunken in, and everything else to just look fat. I gained 75lbs over the course of two years, that rested mostly in my belly and breasts. And once the weight gain became noticeable I completely switched my diet. I cut out soda, fatty snacks, trips through the drive-thru, candy, and a lot of carbs. I started drinking more water, eating tons of fruit and vegetables, and only eating healthy proteins, and very little carbs. The thing about Prednisone though… is as long as you’re on it, you’re going to keep gaining weight. My doctors have told me I could be eating the tiniest amount of food possible to get by, and be working out hours upon hours a day, but if I’m still taking steroids, I might as well be eating all that junk I gave up. I’m still going to gain weight. Now, will I actually keep eating that junk? No, of course not. I like my diet now. I like my fruits and vegetables. I like drinking water and tea instead of coke. And I love cooking for myself, which means I control what I put in my body.
I live a pretty healthy lifestyle right now. The other night at my family’s home, I ate a giant serving of Kale salad to start, followed by 2 oz of roast chicken, half a roasted red potato, and 6 spears of asparagus. I was full. And I refused dessert later on as well. Not because I’m dieting, but because I truly did not want it. I was still full from dinner, and didn’t need sweets to end my evening. I’ve learned that I do better “grazing”, eating small healthy meals throughout the day, instead of 3 large ones. And as I said before, I snack mostly on fruits, vegetables, and healthy proteins now. I truly cannot remember the last time I went to McDonalds, or ate a bag of chips.
So to recap… I eat a healthy, well rounded diet, that leans more towards Vegetatian than Omnivore. I get regular exercise when my body allows it, usually 3-4 times a week if I’m feeling good, and 1-2 when I’m struggling with pain. I drink well over 8 glasses of water a day, as well as juice and tea. While I love dessert, I never overindulge, usually only eating something of the sweeter variety 2-3 times a week, and only in moderation. And I take care of my body, meaning I use a fantastic skincare regimen by R+F on my face, I moisturize my limbs daily, and exfoliate dead skin as needed. For a “sick” person, I do more than the average patient in attempts to stay as healthy as possible and not add to the stress my body is already under. So PLEASE think before you speak when you tell me I would be cured if only I lived a healthier life. Because I’m betting if you really knew me, you’d be surprised to learn how very healthy I am, despite my incurable disease. Hell, I might even be healthier than you!
3) You should just go off your meds. I bet you would feel better if you stopped taking so many drugs.
When people tell me this, I have a really hard time with the struggle to not hit them in the face. The rage that consumes me runs deep, that’s how very serious I take this comment.
Going off of pain medication isn’t like the decision to stop taking Advil for your work-related headaches. It’s not like switching to a different multivitamin. And it’s certainly not a decision that can be made on the fly because you’re not a fan of Big Pharma. To be clear, I am not a fan either. But for now, Big Pharma is responsible for keeping me ALIVE.
I have gone off my meds on purpose, twice, in the last three and a half years. And to be clear, I didn’t even stop them cold turkey. I tapered down slowly, per recommended guidelines given by my doctors. However, that didn’t matter. My body freaked out from the withdrawal of much needed medicines. Medicines, that sole purpose is to keep me mobile, that help me walk and live an active life. I stopped talking them, or rather aggressively cut the dose down because I was tired of the side effects. Prednisone, for example, has caused 75lbs of weight gain, and while I remain on it, I continue to gain weight.
I had an appointment with a Neutologist last month, whom told me that as long as I’m on prednisone, I could be the healthiest woman alive, and it would mean nothing. I could starve myself, eat less than 500 calories a day, exercise until I bleed, and if I’m still taking he steroid, I will still gain weight. That kind of fact is hard for me sometimes. I hate looking at this body that I don’t feel is mine. And when I get really down about it, sometimes I think ‘why not just go off my meds?’
But every time I do, I end up in the hospital, with either catastrophic withdrawal symptoms, or worse… to be clear, none of us want to be in the hospital. It’s not like a vacation from reality, or a chance to ‘take naps all day’ like one idiot suggested. Being in the hospital sucks.
It’s all also extremely expensive. So before you think about commenting on how my life would be better if I went cold turkey on all my meds… I want you to stop and really think about what you’re telling me to do. You are asking me to not only put my life in danger, but also possibly die. And for all of you out there who don’t have chronic illnesses or diseases, none of us “sick people” have a death wish. We actually want to get better.
So yeah, maybe I am a broken record. Maybe I have told you and others many times what is and isn’t okay to say to someone like me. I’m just hoping one of these days it’s going to stick. That one day, hopefully not too far in the distant future, I can have a conversation with someone that doesn’t involve their “great advice”. Because at the end of the day, unless you have the letters MD attached to the end of your name, your “advice” is more harmful than you know. Stick with what you do know. Be a friend. Be helpful. Listen. Read medical journals if you truly want to know about my disease. Read facts that don’t come from Yoga magazine or from your fave celebrities’ hairdressers best friends nutritionist who knows a guy that had a girl who has what I have. Stop talking about what you don’t know, and concentrate on what you do.’you have a friend who is ill, and she just needs you to listen, be kind, be thoughtful, and just be there.