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.
Today I read a post on RheumatoidArthritis.net about the love and comfort that pets can give us when we are ill. And I agree, that couldn’t be more true. Sometimes, I wonder what my life would be like without the comfort and love that my two feline fur balls give me day to day.
When I first adopted Astrid and Aureus, they were only four months old, and had personalities wildly different from how they are now. I had just made the (super unfortunate) decision to move in with my partner at the time, and we had made the (very compulsive) decision to adopt cats after seeing a sign for Humane Society Adoptions at our local Petco. Looking back on that day now, I’m surprised I couldn’t see that as the beginning of our end… But that’s another story for a day that involves tequila and the reminiscing of bad decisions.
Anyway, we were at Petco, and they were allowing people to play and pet the cats in a small room at the back of the store. My partner took an immediate liking to a very friendly little ginger cat. He sat holding the tabby in his lap, unable and unwilling to move for over an hour. It was love at first sight. We decided then and there that the ginger was coming home with us, but I hadn’t found a second cat that pulled on my heart strings. I didn’t want the first cat to be lonely, and I didn’t want to bring home a second cat later on. If we were going to get cats, we were getting two at the same time, so as not to have to deal with introducing two cats from different shelters later. Cats could get very territorial, and introducing a new cat to a house that already has one is a long stressful nightmare.
So I spent time holding each of the other eight cats in the room, trying to decide which one would be a good fit for me. Most of them were 3-6 months old kittens, and had just been “fixed” the day before. And there was one older black cat, whom was adorable, but we were there for kittens. Finally I spied a very shy black and white cat, hiding behind one of the cat trees. She was very skittish, and the Adoption Agent told me she was a rescued feral kitten who’d been living under a dumpster. While my partners cat was an “abandonment”, given back to the Humane Society once he’d grown out of the small kitten phase. Tears filled my eyes and the choice was made. These two were destined to come home with us.
A year later, when I moved out of that apartment (and relationship), both cats came with me. Aureus, the ginger male, and Astrid, the black and white “Poky little kitty”. They’ve been with me ever since. Aureus, who originally was a super cuddly love bug, has grown into a large and lazy ginger tom. And Astrid, my shy and skittish little girl, is now Mistress of the House, always looking for a cuddle and some treats.
I love my two fur balls, and not only because I’ve always been a cat person, and have kept cats since I was a small child. But because they are really the most empathetic and loving creatures to have around. My cats always know when I’m not feeling well. In fact, on quite a few occasions, they’ve woken me in the night when they’ve sensed something was wrong. It’s usually just before I’m about to have a pain flare, or be hit with a severe migraine. Because of their kitty alerts, I’ve been able to take an extra dose of steroids, or pain killers. Or I’ll get up to use the bathroom and grab a full glass of water in case it’s hours before I’ll be able to get up again.
They aren’t just supportive in the practical sense. Loving my cats, watching them grow, and sharing their warm kitty purrs, well it just puts me in a good mood. When I’m down because the pain is depressing, or I’m feeling alone because of the nature of my disease, I know I can always come home to these two. No matter what, I always have my loving fur bombs to cuddle and love. They lift my spirits, sometimes when nothing else can.
I know a lot of people put stock in how great dogs are. Seeing-eye dogs are great for the blind. They have those dogs that are trained to sense when their owners blood sugar is low, for those with diabetes. And that’s great for those people. But what I think would really do the world good, is more cats for comfort. There’s nothing better than holding a purring cat. Or feeling sleep for an afternoon nap and waking up to see that your two cats have joined you for shared fuzzy snooze time. There’s something fantastically comforting about your cat pushing their butt under your head so that you can have your very own purring feline pillow.
Being sick can get really hard to handle some times, and I mean mentally as well as physically. But I think every day gets a little easier to handle as long as I have my two furry kitty bombs by my side.
Except when I get a tail in the mouth… that’s not always so fun..
There comes a time in everyone’s chronic pain journey where they’ve had enough of something. It may be that they are sick of the lower back pain that tortures them daily, or the migraines, or knee swelling. Point is, everyone has at least one spot that’s the worst with their pain condition. For me, it’s my hands.
When I was first diagnosed with Rheumatoid Disease, my hands were where I could really see the effects of the condition on my body. In fact, to this day, if I want to know how bad a flare is going to be I look at my hands. If it’s going to be a bad one, they will be super inflamed, often enlarged by the swelling around my joints. And man will they hurt!
It’s actually been awhile since I’ve experienced such an excruciating flare in my hands. After my really bad chemotherapy experience in July, I’ve been dealing with more widespread pain, instead of just one localized area. Truth be told, I kinda hoped that after my body freaked out on the chemo, that the chemical makeup of my body would have changed. So many things went wrong with my body after that experience, so I assumed that since I hadn’t had a hand flare in awhile, that maybe they were gone for good.
It’s nice to dream.
It sucks when that dream bubble bursts….
For me, that was around 4am… I hadn’t been asleep that long, as I’d been battling insomnia for a few nights in a row (another story for another day), and had only just drifted off around 2am. I knew the pain was present before I even opened my eyes. Even my fat ginger tabby knew something was up. Cats are very intuitive and empathetic, and my cats always know when I’m having a flare. This morning, Aureus knew, and had decided to help by backing his furry butt into my face as some sort of kitty cat “feel better” hug. It didn’t quite have the effect I was looking for.
I’ve had my disease for three and a half years now, so I’m very familiar with pain and inflammation. I’ve tried so very many different medications, treatments, remedies, and was of thinking, in order to get rid of this awfulness. But some days, like today, the anger really takes over and I get to thinking, “Why body why?!”
Having pain in your hands is the WORST. You really take for granted how often you use your hands, and how difficult life can be without full use of them. Right now, my right hand is swollen to the this thickness of a tennis ball. I kid you not, that’s how far my hand is. The pain runs deep too, all the way down to the bone, causing a great ache.
The pain is so severe in fact, that you can’t use your hand for everyday things. Need to turn a door knob? Sorry, not going to happen. Want to pick up a book or a mug of tea? Well, you can’t, you don’t have enough strength. Want to write your blog with your stylus? It’s going to have to be voice dictation today, your hand can’t even grip a pen.
I only have two hands! If they’re wounded or sore or broken (gosh I hope it’s not broken), well then I’m just S.O.L. And that’s just another painful, and beyond frustrating complication of having this disease. You’d think your body would let you catch a break some time. I mean you only get TWO HANDS. Let them live pain free please!
Come on body, do me this one favor. Pretty please?
For those who know me, I have a severe case of Rheumatoid Disease. A case so severe in fact that I’ve had doctors tell me to my face that they’ve never seen test results like mine, and going as far as to say I’m the “worst patient they’ve ever dealt with”. Yeah, thanks for kicking me when I’m down…
When I was diagnosed over three years ago my doctors used to throw around phrases like “When you go into remission…” and “Don’t worry, you’ll only be on steroids for a few months”. We were so hopeful and optimistic back then. So blindly optimistic.
But now after the years of disappointing x-rays and blood tests, failure after failure of one medication to the next, and 95+ pounds of weight gain from the steroids I was only supposed to be on for a few months, well that blind optimism feels more like blind stupidity. Of course, I know that these things are not my fault. I have an incurable disease that has taken a life of its own. My life, to be exact. It’s claimed my body for its own, stuck a flag in my inflamed flesh and renamed it Rheumatoid Disease Poster Child. What a sneaky bitch.
And the worst part of all of this is I know it’s winning. Every day that I wake up and feel like shit, knowing that before I even open my eyes that it’s going to be a very bad day, I know that it’s winning. Even on the less often days where I wake up feeling kind of okay, when I’m able to shower and get dressed without the aid of another, and actually make breakfast and enjoy eating it, deep down inside I know it’s still winning. Because that’s just one day in a sea of bad ones.
Two months ago, after a year of deliberating, I made the decision to try a very aggressive form of Chemotherapy to treat my disease. The reason it took me a year to decide was because of a side effect that was really really scary. Sure, there were the usually chemo side effects that also didn’t sound great…nausea, vomiting, hair loss, rapid weight loss or gain, possible infections, possible cancers, the list really goes on… But the worst one of all was that it had been known to cause brain tumors in some patients. Now of course they told me this was rare and only happened in a small percentage, but my issue was that I am ALWAYS that small percentage. Since I was little I always ended up being that rare statistic that no one accounted for. The “anomaly”. And I feared if I took this chemotherapy, I would get this rare brain tumor.
It wasn’t until we had exhausted every other medication and treatment out there, and failed, that I started to seriously think about doing the same thing chemotherapy. And in the end, I agreed, and set up my infusion date. Because of the strength of the medication and the weakness of my own body, the infusion would be given over the course of 6 hours. There would be two sessions, two weeks apart, and then I’d wait up to six months for the next one.
On the day of my infusion I was pretty nervous. I got over it real quick though when I was shocked and surprised to find that my father had decided to visit me at the infusion clinic. Til this day he had not attended one doctors appointment, treatment session, or joined my mom at the ER during the many times that I was there. And yet, chemotherapy seemed to be what broke the camels back. Perhaps, he had finally realized how very real and very life threatening my disease was. Or perhaps there was no good surf that day..
During his two hour visit, I went through a few blood tests, and waited around while they poked and prodded me with needles, finally finding a port site they liked for my infusion. Once he left, the infusion started. And the last thing I saw before I fell into a heavy drug induced nap, was my mom by my side, holding my hand in support, as she did everytime I lay in a hospital bed.
When I woke six hours later they were removing the infusion port, and soon after I was hobbling down to the unisex bathroom to change out of my comfort clothes and back into regular street clothes. Mom and I picked up something to eat on the way back to my house, and once there I fell back asleep and continued to sleep for another 15 hours. The next morning I vomitted for the first time, which wasn’t all that surprising, given the amount of chemo that went into my body the day before. But besides that I felt fine. Better than fine actually. I believe I even saw a movie with a friend that day. I remembered thinking, “Well this isn’t so bad, I got this!” How I only wish I could have remained in that happy state.
The next morning I woke with a jolt and I knew something was wrong. My mom had come over to check up on me, and before I could even greet her I was in the bathroom throwing up. As soon as I emerged I started to feel a pain in my chest and a tightness in my throat. Fearing that I was having a bad reaction to the chemotherapy, Mom gave me some baby aspirin and water and we waited. A few mins later I was fine, and she took me out to breakfast to get something in my stomach. We had planned to go shopping afterwards, but I felt so tired after eating that I opted to go home and get back in bed. I fell asleep within moments.
Later that afternoon, I woke not too long after receiving a text from Mom asking if I was ok. Even while still just laying in bed, I knew that I wasn’t. I asked her to come over right away. Over the course of the next twenty minutes I had what felt like a heart attack. I knew better though, this had happened before. I have reoccurring Pericarditis, a painful condition where the sac around your heart becomes inflamed and fills with fluid, essentially drowning your heart. The process feels exactly like a heart attack and can last for up to an hour, and can occur several times in a day if untreated.
The pain was excruciating. I couldn’t breathe, it felt like an elephant was sitting on my chest. I felt nauseated, but I could t throw up. My jaw was stuff and unmoving. And my chest felt like thousands of needles were being slowly pushed into it. By the time my mom arrived an hour later, I was dressed with a bag packed, ready to got to the Emergency Room.
When we first got there, we were not met with anyone who seemed to understand the concept of “emergency”. And it wasn’t until I started to have what appeared to be another heart attack in one of the waiting rooms that they did finally take me seriously. Or maybe it was the fact that was my mom was crying and shoutings and begging one of the nurses to look at me and help me. Finally after what seemed like forever, although maybe it was just an hour, I was taking into a room and given an EKG. After another long wait, I was taken into a room that was very long and filled with many people, divided by curtains. Doctors and nurses came and went, I was given a CAT scan and many blood tests, and finally after a very long time the doctor came back with the results. Yes, it was Pericarditis, and No, I could not leave.
I was admitted into the Observation Ward overnight. Because it was a Saturday, and the machine that could in-depth test my heart could only be operated on a Monday, I was told I would be there until at least then. 48 hours in the hospital, it would be my longest stay at Queens yet.
It was during my second night that shit really hit the fan. I had gotten up in the middle of the night to use the bathroom, and I guess the strain on my heart was just too much for my body to take. It started as just a flutter of activity, like I had walked up a long flight of stairs, or had a lot of caffeine. But it progresses to a sharp stabbing feeling within moments. I rang for the nurses, and after what felt like a ridiculous amount of time, someone finally came to check on me.
As a side note: The Queens Observation Ward had the worst response team ever. Everyone working there is way too relaxed, and they seemed genuinely surprised if one of their patients needs actual help. Which by the way, is why all of us were there.
While I’m not ready to talk about what happened to me that night on a personal level, I can tell you that the doctors informed me that I was close to death. Had I not been attended sooner and given medication I may have not survived. The last thing I remember is the beeping of the heart rate machine as it slowed and nurses yelling at each other. Everything went white and the next thing I saw was a dark room. At the time I thought I was dead, but in fact I was just waking up in my darkened room after I had passed out from the pain. Once stabilized, the nurses shot me up with a ton of pain killers and I had a deep snooze. It was the next day that they moved me to the Queens Heart Ward, where I would stay for another 7 days.
I won’t bore you with the details of my long hospital stay. There were some really bad days, like when the doctors accidentally caused an involuntary “colon cleanse”, or when I spent hours on end puking into a bucket- God, I hate chemotherapy. And there were some better moments, like when my family visited, or when my Mom found a volunteer Harpist to play for me in my room during lunch one day.
After 9 days of being stuck in that awful place, I finally begged hard enough and my doctor released me to my mother, as long as I promised to stay with her for the first night. They really did want me to stay for a few more days, but I feared if I did I might lose my mind. And I missed my apartment and my cats so badly. Although my Mom did visit them everyday and she let me FaceTime with them so I could see their adorable furry faces. I cried a lot after those calls.
After all that time in the hospital, my doctors (Cardiologists and GP’s) concluded that I had Reoccurring Pericarditis (Duh!) but that it was going down so I could be released on my own recognizance. I was going to have to take a medicine called Colchicine for six months to help prevent Pericarditis as well. I’d been on it before, and luckily there weren’t any side effects. I also had to take a ten day regimen of Aspirin. Yuck. That coupled with the chemotherapy, still very active in my body, brought on heavy waves of nausea and vomiting that didn’t seem to rest.
I spent the first two weeks out of the hospital sleeping constantly, and vomitting every other moment. I lost 28 pounds from two weeks before the chemo when my pain was so bad that I couldn’t cook or eat, to three weeks after the hospital when the sight of food still made me sick. While not the healthiest way to lose weight, it was the only victory out of an otherwise horrendous month.
It’s been just over a month since the fateful day when I had my first chemotherapy infusion, that Kickstarter this awfulness. To this day I still got nauseated every now and then, and vomit 2-3 times a week. From what I can tell, the first infusion did nothing for my pain, and I’m in the middle of an “active flare”. I never did get the second infusion, half because I was too sick during the time it was scheduled and other reason…well that’s to be continued…
My Pericarditis is under control for now though I’m still prone get it at any time of i change my medications rapidly or start something intense like chemotherapy. Apparently my body is very against trying new things that could be good for it. My Rheumatoid Disease is still trying to stake its claim, holding tight to that flag, trying to make me its own. Comments will be made as it progresses.
Blackness. Or maybe it was all a bright white. Maybe there was no color at all. Just silence. Maybe that quiet seemed like it would never end.
All I could concentrate on with pain. It seemed like pain was all around me, infiltrating every bone in my body, every piece of flesh. It was so dark and solemn, everything seemed so far away and out of my reach, and yet it was deafening in the darkness.
Where was this place that I had been brought to? Had I closed my eyes and found the place that I would breathe my last breath? Was this the gate that I was meant to cross? How did I even get here? How did any of us get here? Was I meant to be here at all?
Noise. Shouting, machines whirring, everything seemed so loud. It was too loud. The pain hurt. The noise hurt. I just wanted everything to stop. I was ready for it all to stop…
Vision blurred. I saw people running around me, they’re fuzzy outlines making no sense to me as my eyes opened and closed. The pain. The pain was deafening. I just wanted it to stop. I was ready for it to stop. I just wanted it to stop.
I close my eyes, and left them closed for a while. I opened them again, blurred lines still running about… I closed them. Open. Close. They moved with the time of the beeping machines around me, alerting people to my heart rate as it slowed, slowed, slowed…
Finally, the pain overwhelmed me all at once. My breath stopped, my arms went limp, my body had decided… My eyes closed and all I saw was white. It was everywhere. And I was everywhere. I just wanted everything to stop, and it did. But only for a moment.
Only for a moment.
For all my readers, I know it’s been some time since I’ve posted a blog. I just wanted to let everyone know that it’s not because I’ve abandoned my writing, but because my health has taken a serious decline. I just got out of a long hospital stay where I was admitted for heart complications related to my severe pain disease. I will be writing about the experience soon, once I’ve gathered my thoughts together and am able to express them with a little more clarity.
Thank you for your patience!