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?
When my doctor first prescribed Prednisone I thought I had found a cure. After just a couple months of severe pain, without knowing what was going on, taking steroids zapped it away like it was never there. I convinced myself that I wouldn’t even need other medications for my RA. I mean why take anything else when I felt so good on the Prednisone? But my doctor cautioned me that I could only be on steroids for a short period of time because of the many bad side effects that would happen. I truly thought he was overreacting or talking about other patients, certainly not me.
Over time we came to realize that a lot of RA medications didn’t work on me. Either I had allergies to them, I built up a tolerance, or they just weren’t strong enough against my ever growing severe disease. And so I stayed on Prednisone much longer than my doctor would have preferred. In fact three years later, I am still on it. True, my dose is much smaller than it was in those first days, but the side effects were still the same.
The weight gain started out as a slow crawl. In fact, in the first year of being on steroids I thought that I was just lucky and had escaped the side effects everyone else would bemoan. The telltale “moon face”, medically known as Cushingoid, wasn’t happening, and I seemed to be faring well with the drug. It wasn’t until year two that I started to see the change. Again, it started slow, and then suddenly I looked in the mirror one day and there was “moon face” looking back at me. The weight started really piling on around the 16th month. Now I can honestly say that I have gained 80 pounds while being on Prednisone.
80 POUNDS! Shocking isn’t it? At first it was most noticeable in my face and breasts, and I thought I could handle a puffy face and a bigger cup size. But eventually it moved to my belly and now I look like I’m 8 months pregnant. I am disgusted when I look at myself in the mirror. It’s not me looking back. It’s HER. The girl who has this life I never asked for. The girl who carries all this pain and sadness and FAT.
And the absolute worst part about all of it is that I eat healthy. I know of cases where people start to put on the weight and they just decide to let themselves go because why not, it’s already happening. But that’s not me. I care about my diet, and my weight, and my body. I have a very healthy food regime, I count calories, I do portion control, I rarely allow myself to snack, and yet.. Nothing I do helps. It just keeps coming.
A typical day of eating looks like this for me:
Breakfast- one cup of tea or coffee, oatmeal, and a piece of fruit.
Mid-morning- a cup of tea (usually Yogi detox or slimming tea)
Lunch- salad, or roasted vegetables and quinoa, or dinner leftovers, or a healthy sandwich
Dinner- 4oz protein (fish, steak, chicken), steamed vegetables, quinoa or brown rice
And that’s it! Does that seem like the kind of diet that packs on the pounds?? No. My weight gain has nothing to do with what I eat. Prednisone is such a terrible terrible drug. I can look at a Snickers at the register at Safeway and gain two pounds, eating not required. The contents of my fridge are very boring. I have milk, cheese, juice, water, and fruit and vegetables in my fridge. My freezer is filled to the brim with bags of steamable vegetables, and frozen proteins. No ice cream, cookies, or chocolate. No pudding cups, or candy, or desserts. All I have is healthy food. My cupboards/pantry hold spices, oatmeal, soups, tuna, and rice. I don’t keep crackers or cookies or anything that could ruin my diet in the house, to avoid temptation.
And still, every morning I wake up and look into my mirror and see her. She won’t let me go. If only one day I will get to glimpse the girl I used to be, just once.
So you know what can be really hard to deal with, when I’m already faced daily with this depressing sight? A constant reminder that I’ve gained weight. Because, if this writing hasn’t already convinced you, I am very very aware of the fact that I have gained weight. I have successfully used a mirror every day since I was probably three or four years old. I know how they work. You look in, and you see what you look like. It doesn’t take a genius to figure it out. You don’t even need to be intelligent. My cats know what the mirror is, for goodness sake, and they love their reflection (good for them).
I know what I look like. I’ve been dealing with the changes every day for the last couple of years. I’ve dealt with the stress of trying clothes on in fitting rooms and realizing I’ve gone up another size. I’ve dealt with putting old clothes in storage because they don’t fit anymore, but I’m unwilling to part with them. I’ve dealt with learning new makeup tactics to slim down my face. Ive dealt with my hair falling out in clumps. I’ve dealt with less and less male attention as my body has grown round and unattractive. I AM AWARE THAT I’VE GAINED WEIGHT.
And in this very aware state of mine, you know what’s really unhelpful and hurtful? The constant reminder of the fact. You do not need to tell me. I already know. I knew before you had the idea in your head to tell me. I knew before you woke up this morning. I knew two years ago when you were still in denial that I was sick at all. Telling me what I already know serves no one but yourself.
I read a really great article today on RheumatoidArthritis.net talking about people giving unsolicited advice to people with chronic illness. The author made a really great point that I think can be applied here as well..
“Dispensing unsolicited health advice to someone with a chronic or terminal illness (or any illness) isn’t really a way for people to help the sick person, but to help themselves deal with the harsh reality of sickness and their own mortality. It’s like picking on someone else to make yourself feel better. Don’t tell a sick or injured person what they should do, because it’s a sneaky and harmful way of dealing with your own fear of death,” “You’re saying, tsk tsk – I wouldn’t let this happen to me the way you’ve let it happen to you.”
“Giving advice to people…blames the sick person for your discomfort with their reality and shifts any accountability you feel back on to them. We have ethical responsibilities to the vulnerable in our communities – and we find excuses to avoid them.”
I could not agree more if these words came from my own mouth. In fact I’m sure the author and I share some sort of psychic connection. This statement while talking about giving medical advice to the chronically ill, can be used in the same context for weight gain for the same group of people.
We already know the problems that we face. We can see our bodies change and we know we have done everything in our power to change it. But there are some things beyond our control! It’s not like weight gain for a regular person. Our weight gain has nothing to do with binge eating, or portion control, or living on a diet of Oreos and McDonalds. Most of us with chronic illness are on very strict diets due to the medications we take. More often than not, we don’t even eat full meals because food makes us nauseated and/or sick. I’ve had days where I’ve eaten nothing but breakfast because for the rest of the day I felt nauseated and gross. Or just not hungry.
So when people give us ‘advice’ about how to handle our weight gain, it really comes off like a slap in the face. It’s insulting. Do you really think I haven’t tried everything I could possibly think of already to get rid of this excess weight? Do you think I’m just sitting at home twiddling my thumbs and eating a King Size Milky Way and lamenting about why I can’t lose weight? Trust me when I say I have tried whatever you want to suggest to me. I’ve done almost every fad diet out there. Gluten free? Tried it. Dairy free? Tried it. No/low carbs? Tried it. Only eating fruit til noon? Tried it. No dessert, sugar, salt, flavor, butter, fat (etc) of any kind? Tried it. Miracle supplements? Tried it. Vegan/vegetarian? Tried it. Lemonade diet? Tried it.
I’ve tried everything you can think of and some that you haven’t read about yet but will tell me about as soon as you have. Please do not insult me and my intelligence by suggesting that I am sitting around doing nothing to combat this disease that has settled upon my body. And I’m not just talking about the weight gain here. I have tried numerous medications, treatments, remedies, and “cure-alls” in my attempts to fight my incurable chronic disease. For you to suggest otherwise is extremely insulting and disrespectful.
Perhaps instead of spending so much time telling me how I should better my life and my health practices you should concentrate on your own. Go ahead and look into that mirror and think long and hard about why it’s so important to you how I look and feel. Read over that quote again from RheumatoidArthritis.net and think about who this lecture really is for. Because I have my stuff handled. I am doing everything in my power to get well and fight this disease. I am very aware of my own mortality, and they way I live my life. So next time, before you want to share your “advice” about how I should handle my body, my disease, and my life, I urge you to look into that mirror on the wall and ask yourself who you’re really worried about. I think the answer may shock you.
**Excerpt taken from “Don’t tell RA patients what they could be doing to cure themselves” by Angela Lundberg on http://www.rheumatoidarthritis.net**
Thank you for taking the time to read my blog. If you would like to help support my fight against severe Rheumatoid Disease and Osteoporosis please visit my page at http://www.gofundme.com/sixthousandsteps
Merry Christmas Arthritis.
I see you’ve started celebrating early this year.
I thought with the holiday you might have wanted to sleep in, or perhaps take a day off completely.
It must be tiring working so hard day in and out.
Making sure my flesh is inflamed in all the right places, breaking down my joints, figuring out new ways to destroy my body from the inside out.
Sure must be exhausting work.
That’s why I thought you might like to take the rest of the month off.
Surely you deserve a break.
Put down those chronic pain inducers, your crafty invisible illness disguises, and just relax.
Have an eggnog.
As for me…
Well it would have been nice to wake up on Christmas Day pain free for once.
Hell, I would have even taken a 5/10.
Oh, don’t you worry, I wouldn’t have spilled the beans on you. It could have been our own little secret.
Just between the two of us.
You could still do it you know, it’s not too late…
Ease up on the inflammation throughout my body.
Turn a blind eye, and stop the purple bruising around my knuckles and feet.
Look the other way as you pull the swelling from around my joints, making it possible for me to walk without limping.
What a great Christmas present that would be.
Turn my hands back to normal so they can move again without looking deformed and useless.
Drain the liquid from around my knees so I may bend down to hug my family and friends without holding back screams.
Ease up on the pounding inside my head.
Today of all days, let me feel happy on the inside.
Just this once.
Please, Arthritis, please.
Let me enjoy one normal day.
Let me be pain free.
It would be such a lovely gift, one that I would cherish for a whole year.
Let me have a day without wincing, a day without tears, a day of fresh steps forward, and none back.
Let me have my Christmas.
Are you there, Arthritis?
Can you hear me?
You know how when medical examiners talk about a dead body they always refer to it being cold? Well, that’s because the blood has stopped working it’s way through the body. The circulatory system has stopped, the blood isn’t moving. That always makes me wonder about when we get chills when we are sick. Our bodies feel cold. Is it a similar feeling to when our bodies are dying? Has the blood stopped moving? Do we feel cold because our bodies are at a standstill?
I feel cold.
My teeth are chattering, my hands shaking, my body violently convulsing. I feel so cold. The fan is off. Why am I cold?
Is the pain doing this to me?
I’m in so much pain. The bones feel broken again. How many salon pas patches can I wear before the whole exercise is redundant? Does the shaking cold have to do with the pain?
I wish I could sleep.
But every movement I make ends in moans of despair. It hurts everywhere. And I’m so very cold. It hurts.
Hours pass as I doze in and out. The pain waking me every time I move an inch. But the exhaustion lets me doze again and I find comfort in the small snatches of rest I get here and there.
Every slight movement causes extreme pain. My fingers look grotesque. They are fat and shiny, like pudgy sausages. I can see the bruising of purple, only that’s not really a bruise. It’s just the discoloration of my disease poking it ugly head out the window any chance it gets.
Pain. An overwhelmingly painful trip to the bathroom leaves me sobbing on the toilet seat. How many people have to psyche themselves up to stand again? How many people deal with pain on this level? Is it like this for everyone or just me? My knees scream as I finally lift myself up again and hobble back to bed.
I’m cold again. My teeth chatter and I struggle to keep warm and get back into bed. It’s hard to pull the covers around me when I can’t grip them with my hands. They are frozen in useless claws. I peel off the now used anti-inflammatory patches and wonder if they provided relief at all.
I look at my feet, swollen as big as footballs. Shiny and fat. I wonder if they will let me walk today, if they will allow me out of bed. I glance at the clock and yearn for a hot cup of tea. The loneliness is all consuming at times like this. How much easier life could be with a companion. Someone to share my emotional and physical struggle with. Someone willing to try and understand.
I doze again, and then wake to a comforting sight. One of my cats has come to sit with her mom. Her empathy serving as a warm fuzzy blanket Got my soul. She senses I can’t pet her today. So instead she pushes her head against my face, rubbing her face against mine, scenting me, showing me her love. I fall asleep again to the rhythmic sounds of her purrs.
The birds are sounding. It’s morning. It seems I survived the night. One more night passed. I wonder how many to go.
My cats are meowing. I can’t see them because my eyes are still closed, but I can hear them. Please, please, please don’t be a bug. I open my eyes at the exact moment that my body registers the pain.
OMG. This is a 15/10 at least.
Damn, I need to pee. This is going to suck.
I push the bed covers off with the back of my hand. My fingers are swollen and stuck in the position of a claw. They look deformed and I shudder at the thought that those days are fast approaching. I push off the bed and cry out in pain as my knees scream. I hobble to the bathroom and take two deep breaths in before sitting on the toilet seat. My knees are purple and huge. It takes me ten minutes to psyche myself into standing up again. The tears fall as I hobble back to bed.
I’m going to take my morning meds now. Maybe they will kick in while I finish sleeping and I’ll wake feeling good. Maybe.
Aureus is on the bed next to my head, meowing. He wants his morning can of wet food I assume. I open my eyes and the pain is still there. Sorry Kitty, Mom isn’t getting up for that just yet.
I need to pee again. Damn it. Pain is still bad, maybe a 13/10. Why haven’t my morning meds kicked in yet?
I stumble to the bathroom, crying out in pain as I sit on the seat. This time though, I can’t get up. The pain is too strong. I sit there for several minutes, breathing in and out, in and out. I try to stand up and come crashing down.
I lean my forehead against the wall, taking deeper breaths, knowing I’m just going to have to get up, no matter how bad the pain is.
I stand. I scream.
God I hope my neighbors didn’t hear.
This time I hobble to the kitchen and plug the cats water fountain in. I fill their bowl with dry kitty food and hobble back to bed. I fall in, not bothering to cover myself and pass out in exhausted pain.
My body must know I can call my Rheumatologist now, his office opens at 8. I must see him today. Only he can tell me how to get through this pain.
The nurse on the phone tells me he has no availability to see me. I ask what to do and she says she doesn’t know.
Well, thanks, that’s very helpful. She says I can come next week. Well, gee, I hope I’m still alive next week. Because at this moment it feels like my body is shutting down.
I take another 2.5mg of Prednisone. I just need to be able to move. Please, please kick in soon.
I’m so thirsty. I hobble to the kitchen but I can’t open the fridge door. The magnet is too strong. Instead I attempt to open a bottle of water from on top my fridge instead. I can’t. I have no strength in my fingers. Shit.
I go for the fridge again. Screaming in pain and frustration I get it open. With two hands I pull the carton of milk out, praying it doesn’t slip between my grasp. I pour a glass of milk and get a straw to drink it with.
Finally. Thirst quenched.
God I’m hot. And itchy. I wonder if ill be able to wash my hair in the shower today. My hands still stuck like claws. It’s hard to squeeze the shampoo bottle on days like this.
I must have fallen asleep again. Why does everything hurt so much? I have to pee again. My knees are so mad at me.
My cats meow at me from the floor. I try to stand but fall back down on the toilet seat again.
I need help.
This is too much pain for me to handle.
I need help.
If you’d like to help me, please visit my campaign page at:
Christine Lilley’s Life Fund
Amongst the myriad of painful issues I have alongside my Rheumatoid Disease, I’ve been dealing with a new beast, Osteoporosis. Annoyingly brought on by overuse of prescription steroids and chemotherapy, Osteoporosis is an evil bone depleting demon. According to my latest x-rays my bones look like lattice on the inside, more closely related to Swiss cheese than the solidity they should be.
A few weeks ago I slipped on the stairs, thinking that I’d sprained my ankle. As time went by and the swelling didn’t go down, Mom and I decided that an X-Ray might be a good idea. Last Friday our suspicions were confirmed with a stress fracture in my right ankle. Since a heavy cast would prove more painful than helpful, I was told to wrap it up, put ice on it periodically, and don’t do any jumping jacks. It was a bummer, especially since I already have stress fractures in my left foot.
This past weekend was exceptional. I was more active than I’ve been in a long time. Went to a movie night at a friend’s house, a 7 Deadly Sins themed costume party, and a relaxing afternoon chatting with a new friend. Unfortunately, on Sunday morning I woke up with a strange sharp pain on my right side. More than a pinched nerve, this pain felt like I’d broken a rib in my sleep.
As the day went on the pain increased, getting worse and worse, especially when I would bend to pick something up, or stand and sit. By Monday morning the pain was excruciating, so bad that I cancelled two medical procedures set for this week including another endoscopy and a mammogram to check my Lymphoma. I called my PCP and asked if I could come in for a chest X-Ray. Of course I was hoping for the best, a pinched nerve or maybe just a bruised bone.
By the end of the day the results were in and my suspicions were so much worse than anticipated. Not one fracture, but several. Several! And how? It’s not like I’d been hit by a bus, or trampled by the running of the bulls! But that’s the evil beast of Osteoporosis. Once your bones turn into Swiss, fractures start up. My doctors warned me I’d have to be very careful from now on, and to start osteoporosis medications as soon as possible.
But that’s another yuck factor. I spent all of last night reading up on Forteo, the drug my Rheumatologist recommended I start for Osteoporosis. It’s a daily injection with some of the most awful side effects I’ve ever heard. There is no chance in hell that I’m going to inject myself daily with a drug that not only makes my arthritis pain worse, but also increases my exhaustion and fatigue, causes severe nausea and vomiting, and turns me into a mindless drone. That’s right, one of the main side effects is loss of interest/pleasure, discouragement, and increased depression and suicidal thoughts. Are you f**king kidding me?! No. No. No. No. No. No. No. Did I mention no? And that’s just the worst ones, the side effect list is a lengthy one. It also seems that I’d be so dizzy and disoriented that I may have to stay in bed mostly.
That’s not a life. That’s not even half a life. I’d rather be in pain and rival Mr. Glass than give up who I am. I want to live through this, not just survive. Emphasis on the word “live”.
So if osteoporosis wants a fight, I guess I’m forced to go into battle. I just wish I didn’t have to be in excruciating pain during it.
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