For over four years I have allowed myself to entertain the idea that maybe one day I would be well. It would usually come after periods of having little to no pain flares, or a burst of energy after weeks spent bound to my home. Small fantasies if you will, of seeing myself hiking again, or being able to travel more of the world like I’d always wanted to. And then these visionary bubbles of hope would be popped every time a doctor would tell me I was getting worse, or that I’d procured another illness, to add to the ever increasing pile of shit I was already dealing with.
One of these frustrating moments was just a couple of months ago. It was on the same day that my rheumatologist told me I could re-start Remicade, a drug that had started working for me just before I left Hawaii. In hearing this news I was in such a great mood. Having only received three infusions before leaving the island, the drug had already produced amazing results, doubling my energy, and lessening my pain flares. I was stoked.
However, that excitement was short lived when my doctor informed me that recent test results showed I had developed Pulmonary Fibrosis, a lung disease that can be fatal. It turns out that the severe inflammation that Rheumatoid Disease caused in my body had produced scarring on my lungs. It wasn’t yet determined how bad it was, and I was sent for more testing including blood labs and x-rays. On top of that it was also concluded that I likely had Lupus, another autoimmune disease, that my doctors had suspected for many years.
I was devastated. Why was it that every time I started to feel like my disease was turning a corner, I’d turn that corner and walk smack into a brick wall?
Depression came on swift wings with the winters rain, and I started to seriously doubt the years I had left. Research came and went. I talked to my therapist in what seemed like a never ending loop of what if and why me‘s. Every part of my life looked gray, as if I was wearing Eeyore glasses.
But just as nature surprises us with change, so did my mood. The storm in my head began to lift, and with my Remicade infusions, so did my heavy heart. I hate to sound like a cliche and say that my rose colored glasses faded away and every thing seemed okay again, but that’s really what it was like. Without knowing how or why, I found my happiness again, and moved forward at a surprising pace.
I started to exercise a lot more, having finally found the energy to do so. I took long walks that went miles, and explored areas I’d only known as a child. In one of these walks I stumbled across a Cat Lounge, an awesome place where you could literally spend hours petting cats, and resting as they took naps on your lap. Some days, I would just walk up the hill behind my house to a little cafe, sitting by the window sipping hot chai lattes, and writing for hours.
With this burst of new energy, I started to see friends more often, even venturing out more on weekends. For the first time in over four years I was really feeling like my old self again. I even went on a couple dates, and while none of them panned out, it felt good to be out in the singles world again. Energetic, confident, and hopeful.
Now, you’d think that this lovely change in my attitude and physical self would have been celebrated by others. I figured after years of hearing my depression over my illness, lack of enthusiasm for life, and the dreariness of daily pain, that friends and family would rejoice with me that I was starting to feel a little better. Especially with the fact that I had been able to lose 80 of the 90lbs gained on steroids and pain management medications. I mean I wasn’t cured (there is no cure), but it felt good to feel good, even if only for awhile. I knew that there could be periods of wellness, followed by periods of illness. But I wanted to embrace the wellness as often as I could, and make the most of it, while I could.
To my surprise, not many in my life shared my zest in this. You know that phrase “misery loves company”? Well, this was a cracked out version of that. I received a lot of “Well, don’t get your hopes up”, “You’ll probably be sick again next week”, or my favorite not favorite “You could still gain the weight back”.
For fuck’s sake!
Look, I’m quite aware that I’ve been sick-its my body! I’m quite aware there is no cure-I have seen more than a few doctors! And I am beyond aware that my illness varies from day to day, if not hour to hour. But do you understand that when you have a chronic illness that you’ve been told may very well kill you, any day or moment where you feel genuinely well needs to be enjoyed? Can you please let me relish this time where my joints aren’t screaming at me, and I don’t want to cry at the loneliness, and I can just be happy if only for a moment?
Its like I am not allowed to feel well, even if its for a short while. I am the sick person, the sick friend, the sick family member. If I display even a hint of joy, energy, or confidence, then suddenly its this big deal. As if maybe I was faking it the whole time-because yeah, I just faked four years of excruciating pain and fatigue, for sympathy. Instead of letting me be happy, I am berated with “I guess you’re not that sick after all” or “I thought you were too sick to get out of bed”.
For fuck’s sake.
I am NOT sick 24/7. Yes, sometimes I can be sick for days and weeks on end. Sometimes it feels like my entire life is me standing under a rain cloud that follows me everywhere, except instead of rain and thunder, I get new diseases, cancer scares, and Osteoporosis. That sometimes its like I’m in a crowded room screaming and no one can hear me or cares.
So you’d think that when I am feeling good people would be happy? Nope. In the land of Chronic Disease, if you’re not sick and miserable all the time, then you’re not really sick. Or you’re being too optimistic and you need to be brought back down into the ditch of incurable misery, and stay there.
Well… I say NO.
I am not sorry that I don’t look sick all the time. I am not sorry that I don’t feel sick every moment of every day. I am not sorry that you can’t be happy that I can get a moment of peace every now and then. I am not sorry that my new medication makes me feel better some days. I am not sorry that I am not the vision of sickness that you need me to be.
Some days I feel bad, really bad. Some days I feel like I want to give up and die, seriously. There are days when I wonder how I’ve made it as long as I have. I often wonder if it would truly be better if I let my diseases consume me. Yes, it does get this dark inside my head. This is life living with chronic illness.
On the days where the pain wanes, and the sadness cloud clears, and I feel like I’ve woken up like a normal person… let me have that. Enjoy the pain freedom with me. If I’m in an optimistic mood, be optimistic with me. Be happy with me, if only for awhile. Don’t make me feel like shit for wanting to spend one day, one hour feeling like a normal woman. In a life where I don’t know how many normal days I have left, let me appreciate the time given.
Let me be okay, if only for awhile.
Even before I got sick and my whole life turned upside down, my dad would tell me not to bother with relationships and love. From a young age he told me to concentrate on school and work, that I didn’t need to worry about the complications of romance. Despite my contradictory feeling on this matter, I think it really affected me subconsciously throughout the years. we are our parents children, right? Despite our feelings on how we swore to not be like our parents, to not make the same mistakes, we do, don’t we?
My parents divorced when I was very young. My mom raised me primarily, and I saw my dad every other weekend while we lived in the US, until my mom moved us to New Zealand when I was 10. Despite my dad’s feelings on the subject, I didn’t like spending time with him when I was young because he was so strict, and at times cold. Its no surprise to anyone that really knows me that my dad and I have not often seen eye to eye. He has always voiced his opinion on how I was raised, how he felt my mom kept me from him, and his general dislike of the situation after the divorce. No matter how many times I’ve told him I was the one that didn’t like spending time with him when I was little, and that I would beg my mom to not let me go to his house. He “forgets” every time I try to stand up for my mom and set the story straight, and remind him of who left whom. He left. Not us.
I think a lot of my fear of him when I was growing up was how much his “advice” felt like insults and put downs. To this day, he will always stand by his word that he was being parental, and voicing concerns. But when you’re 13 and your dad asks if you’re pregnant and pokes at your belly, that barely extends from your hips, well you tend to fear the comments and advice. To be clear, I was NOT pregnant, I was growing into my body as any teenage girl would.
When I reached my mid-teens was when the “you don’t need a boyfriend” comments began. I was not to be deterred, and was as boy crazy as any hormonal girl of my age. But, when it came to the time of liking someone, I found myself to be quite commitment phobic. This went on long into my early twenties, and even gave me problems in my first long-term relationships. For years I believed that I wasn’t phobic of relationships, that I was just being sensible in not attaching myself to someone. It wasn’t until I found a really good therapist that helped me primarily in dealing with my disease, that I started to understand what had happened.
Subconsciously, I was following my dad’s advice for years, decades even. When I started working in my early twenties, the comments changed from “you don’t need a boyfriend” to “you don’t need to worry about marriage”. Now, I will never really understand why he said these things to me. I don’t know if he truly feels that relationships are a waste of time (he’s in his second marriage, so I can’t see that being an anti-commitment comment), or rather that he thinks I just shouldn’t waste my time. Or maybe he thinks I’m incapable of dealing with them, or that there are more important things I should be concerned with. Which may make more sense now that I’m sick, but these comments have been made since I was 10…
My point is, despite my feelings that I always wanted relationships and eventually marriage, I think his comments subconsciously deterred me from having them. Or rather, having healthy relationships.
Now, I am 35. I suffer from several chronic illnesses, one of which will eventually lead to my demise. And I am alone.
With my illness comes the desire to not suffer alone, and I wonder if I’ve lost my chance to find someone. Days pass into weeks that pass into months, and the loneliness sometimes feels unbearable. Yet now, instead of that incessant nagging feeling that I shouldn’t worry about relationships and marriage, I now incessantly worry that I shouldn’t bother with them due to my shortened life expectancy. Is it fair to engage in love with someone when I can’t give them forever?
I have no one to blame but myself. I listened to the wrong advice for a long time, and now that I’m sick, I worry that I lost my chance to enjoy something I’ve always craved, but never let myself truly have. I can’t get over the feeling that it might be unfair to want a lasting love, if that love might only last five to ten years depending on my hypothesized life expectancy.
These are all what ifs and maybes. But sometimes I wonder if my life would have been different if I didn’t grow up with the whisper in my ear that relationships shouldn’t matter to me. Everyone deserves love, even if they are lead not to believe it is so. Both of my sisters have both married, and here I am dying of a disease that leaves me feeling more alone that anyone can imagine. Sometimes I wonder why my dad told me I shouldn’t bother with romance. Was romance to be avoided by everyone, or just me? And why was I undeserving?
Sometimes I feel so bound by my skin and bones. I wonder how it came to be that I was trapped by the very thing that makes me alive. My body feels like a prison and my disease the warden who lords over everything out of my control.
It’s amazing how you can feel completely alone in a world full of people. I have so many in my life who care for me and help support my medical needs. But when you have an illness that is more severe than most doctors have seen, how can you expect regular people in your life to really understand? Yes, they nod and listen to your answers to their questions. The polite questions that broach just enough of the topic to feign interest, but vague enough to not beg a lengthy answer. At least that’s what most hope. The problem with autoimmune disease is there is no simple answer. You try to answer the way you think they’d like, but their eyes glaze over after a minute. So you learn to clip your explanation to something short and perfunctory, knowing full well it doesn’t even uncover the tip of that iceberg.
This is one way you can start to feel really alone in your body.
Your doctors can’t even figure out why you’re so sick, can’t explain why as time goes by more diagnosis’s are added to the list, why every medication doesn’t make a dent in your pain. They have no idea, and you have no idea how to explain what your body has become.
Sometimes I sit by the window for hours, staring at the birds in the garden below. My jealousy of their absolute freedom sits heavy in my throat, like a dry piece of bread I can’t swallow. I listen to music without hearing the lyrics, barely comprehending when one song ends and another begins. Yet the sound soothes me. Reminding me that other people have felt as I do, trapped in their bodies and minds, sharing their feelings through melody, as I do with words.
I watch those birds, extending their wings, turning their faces to the sun, free to fly where they choose. I sit and watch them, as I watch my own hands curve and deform from pain. I wonder if they feel as we do, fear as we do. Do they sit and wonder how they fly and why? Are they alone in their minds as I am, wondering when will be their last flight?
I recently had coffee with an old friend, and we talked a lot about past relationships. So much so, that I’ve been dwelling on the memories of my relationships for days now. Truthfully, I’m sneaking up on two weeks here. Two weeks of late night insomnia, where my mind instead of doing the nice thing and allowing me to sleep, decides to remind me of every single person I’ve ever dated. Truth be told, it’s a long list, and sleep doesn’t seem to be getting any closer.
When I was younger, you could have called me “boy crazy”. I had a lot of crushes. Although, I was also shy, not having my first kiss until I was fourteen years old. An embarrassing affair at a friends birthday party, with all of my comrades watching hungrily to see if I’d mess it up. I did. Turned my head the wrong way, smashed noses.
In time I got over the shyness, and in turn learned how to kiss, I suppose. With my seventeenth year came graduation from high school, my first real job, and college. I don’t quite know how or when it happened, but that year I blossomed. No longer did I feel like an ugly duckling, or shy as a mouse. I grew more confident of myself, and finally started to understand who I was as a person. That’s when I started to really date.
As the World Wide Web grew more and more popular, and I was gifted a computer from my father, I found myself drawn to chat rooms where I could flirt more easily, having a mask of anonymity to hide behind.
By the time I went to university in New Zealand, I’d found my stride in the dating world. My best friend Carmel and I used to constantly joke that this year or next year would be the year we would find boyfriends. And while we always gave it a laugh, and crushed on numerous, I don’t think we were ever fearful of not finding a life companion. It was only a matter of time.
Fast forward fourteen years, and here I am at thirty five, still single. Not that I haven’t dated. I’ve held two long term relationships in that time, as well as dated countless others. Do not misunderstand me, it’s not that I fear commitment. It’s as they say, I just haven’t found “the one”.
For the last two years I could have sworn it had to do with my illness. I mean I did have all my hormones turned off due to long term pain management medications. Over a year of no libido is a long time. But now that I’m off them, and my hormones and libido are back in check, I can’t really use that as an excuse. Perhaps it was my insecurities all along that kept me alone. Confidence shows, so of course insecurities and doubt can show as well. Throw in a good dose of self loathing due to weight gain, and you don’t really paint a pretty picture.
So here I was, in a coffee shop, listening to my old friend talk about how they couldn’t find anyone to date who was worth it. And it catapulted my mind into a wormhole of every relationship, crush, sexual encounter, and glance, I ever had with another. Suddenly I was up at night wondering where I had gone wrong, if I should have given one a chance, or if I had wasted time with another. Your mind sucks that way. Anytime you want to sleep, it’s always there to count on with sneaky little unspoken comments like “they could have been the one” or “should have given that guy a chance” or “too late now”.
I hate my mind at 3am.
But despite my mind attempting to screw my sleep pattern, I did learn something of all this. My disease was never keeping me back. It was me. And all those other relationships and crushes and scenarios, well they didn’t work out because they weren’t meant to. My heart was still on reserve for the one who was worth it.
We can’t judge our relationship statuses on the timing of others. My old friends dating life might not be working because he’s yet to meet his penguin (yes, I am using a Never Been Kissed reference, deal with it). Carmel found her soul mate eight years ago, and married him last year. It doesn’t mean that I will never find love. It just means that it’s not my time. Both of my sisters have married already, one being ten years younger than I. Doesn’t mean I won’t. And it doesn’t mean I will. But I’ve got to stop thinking negatively about dating.
People say you’ll meet someone when you’re ready. I don’t think I was ready before. But that was then, and this is now.
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.
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?
Yesterday started like almost every other day. I woke up around 6:30am, cringing before I even opened my eyes. The pain wasn’t too bad, but it was definitely there. Probably coming in at a 5/10, if I had to gauge it.
I stretched. Wiggling my fingers and toes, twisting my torso from right to left, attempting to pinpoint exactly where the pain was at its strongest, and where it’s weakest point was as well. Knees, it was definitely in my knees. Feet, yep, they were swollen too. Fingers, however, weren’t as bad as usual. All in all, there was a chance I might be able to have an okay day.
In fact, by the time I’d had a shower, got dressed, had my coffee, and even put a bit of makeup on, I was feeling pretty good. Or at least good by my standards.
I had plans to meet my mom in town if my body was feeling up to it, and since my limbs seemed on board with the idea of leaving the confines of my bed, I left the house eagerly by late morning.
It was when I was standing on the curb at the crosswalk, waiting for the light to change, that I realized this act felt very similar to when I used to head to work. Bag under my arm, ear buds in my ears playing my latest favorite Pandora playlist, pep in my step… I mean to any passerby I probably looked like a regular woman.
When was the last time I’d felt like this? When was the last time I felt any semblance of normalcy in my life?
I traversed two blocks to the bus stop, where I boarded an express bus headed into downtown. I flashed my pass to the bus driver who gave me a familiar look before waving me past. I knew the look all too well, as I’d seen it more often than not since acquiring my disability bus pass a year and a half before. It was the “I wonder how she got that pass?” look. A look that was often also seen on the faces of other bus riders when I took a seat in the “elderly and disabled” section. Though that look was usually accompanied with a scornful frown, or an exasperated sigh, and a rolling of the eye that was supposed to convey their outrage that a young woman like myself would dare sit in their section.
Yesterday, however, I was feeling peppy enough to walk past the disapproving eyes of the elderly, and secured myself a primo seat in the back of the bus. And there I stayed for 21 minutes until I reached my destination. And once there, I hopped out of my seat, a little painfully I might add, and traded the cold air of the bus for the sticky, humid air of Downtown Honolulu.
Instantly feeling hot and uncomfortable, I walked across the street and into my favorite discount store, eager to browse the racks and abuse their free air conditioning. It was only midday by this point, but I couldn’t help feeling a bit fatigued. Sure, I’d been awake since the early morning, but I hadn’t done much in that time, had I? Just slowly gotten ready for the day, had a coffee, and caught a bus…so why was I so tired?
I called my mom to get an eta on her whereabouts, and after figuring out that I had about thirty minutes to spare, I headed to my favorite local coffee shop for a much needed latte. It was only a four block walk from the discount store I’d been in, but gosh did it feel longer? And the sun, the hot, stifling summer sun…there was no relief from its piercing rays. Why weren’t there any benches or places to sit downtown? Not one shaded park bench or concrete slabs to lean against so one might catch their breath or hide from the blinding light. When did the town get stingy on places to sit?
By the time I’d reached Brue, my favorite coffee bar, I felt weak in the knees, and not in a romantic swoon kind of way. My feet throbbed, my mouth was as dry as desert, and I was “sweating bullets” as my friend liked to coin it. I felt hot, dizzy, and exhausted. Was it always this hot? Was I just out of exercise, or did those city blocks seem much larger than before?
However, I was much happier once inside the doors of my beloved caffeine haven. Recognizing me, the barista started my order before I’d even reached the counter, and after delighting in the fact that I’d finally filled up my stamp card, meaning that my next cup was free, I settled down to enjoy my favorite latte.
By the time I met up with my mom I was feeling much better, caffeine always has that affect on me, and looked forward to spending some quality mother/daughter time. Preferably from the comfort of her air conditioned Mercedes. Unfortunately, she needed to make a quick 30-min stop at the local tire shop to get her back tires replaced, first. Assuring me it would be quick, she had an appointment afterall, we headed to the (thankfully) cool waiting room of the establishment, to wait.
I took my midday medications with a sip of water from the community cooler. Thank goodness the water was cold as ice.
Customers walked in. Customers walked out. My knees started to ache, swelling up from the heat, and stiffening from sitting on a hard chair for too long.
I dozed once, twice, three times.
My fingers started to swell, and my feet felt tight against the restraints of my slipper straps. Gosh it was hot, why was it so hot.. I left the no longer cool waiting room and took a lap around the parking lot, trying to figure out what was taking so long with our car. A glance at my iPhone clock and I cringed, realizing we’d already been there for an hour. So much for it taking no time at all with a scheduled appointment…
By the time they relinquishedour car back to us it had been two and a half hours! My entire body by this point was begging to be put out of its misery. I’d only been sitting in a slightly air conditioned room and yet everything ached like I’d just run a marathon. At what point had my flare started? I didn’t even know. All I knew was how I felt now- hot, sweaty, sticky, and exhausted, with a dull yet painful ache widespread throughout my limbs. Because of our unfortunate change of plans for the day, mom and I grabbed a quick bite (as we’d missed lunchtime while sitting in tire shop hell), and then I headed home for what I knew was going to be a hard nap.
Crawling up onto my bed was brutal. My limbs weren’t impressed with every way I tried to get comfortable. They were too tight, too achey, and the exhaustion didn’t help as I’d have liked. It took too long for me to find a comfortable position in which to arrange my tired and sore body parts. Finally, after what seemed like hours, fatigue ruled that my body was going to sleep and that was final!
Late last night I thought back through the day, and I pondered at how different my life was now compared to when I used to work. When I was employed I used to rise around 7am and reluctantly head into the office. I’d usually work an 8-9 hour day, with only one or two quick breaks where I’d run out for some coffee or a snack. I didn’t need naps, nor did I feel the weather temperatures as much. I’d come home, and while on the rare occasion I’d take a nap, it would only be for a thirty minute stretch. I always had so much to do after work, like make dinner, or see a movie with friends.
Then I thought back onto the day I’d just lived. Sure, it may have started at a similar time, but the activities and feelings were vastly different. I was no longer a “Working Professional”. I didn’t have a 9-5, and a lunch break, and frequent trips to the water cooler.
I was, and am, a full-time patient.
My life is ruled by medication schedules now. I get tired from riding the bus, and walking a few city blocks. I fall asleep in waiting rooms, and get hot flashes in already hot summer weather. It’s been like this for two years!
And yet, somehow, I’m surprised by it every single day. My reality is that I’m a full time patient. And now my job is to learn to accept that.
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I broke a plate this morning.
It wasn’t on purpose.
Sometimes I really take for granted what I have in this world. And I’m not talking about materialistic things like a closet full of nice clothes, food in the fridge, and a roof over my head. Though those are very important things to have, don’t get me wrong.. I am extremely grateful for the roof, and the apartment it’s attached to. I am happy to have clothes to keep me warm/cool, even though the majority of them are secondhand (clothes are clothes). And I know I’m lucky that I get food stamps monthly that provide the food that fills my fridge and cupboards.
I am grateful for everything I have.
But what I’m talking about is taking things for granted that we don’t usually think of. In college, I took American Sign Language, and for one day our professor asked us to put ear plugs in so we might understand what it would be like to be deaf. I lasted about three hours before enough was enough, and I took them out, continuing on with my regular day. I couldn’t handle what I felt was a burden. The worst part, of course, being that I totally missed the life lesson my professor was trying to teach about how good we had it, when others aren’t always as lucky.
Yesterday, I really got what my professor was trying to convey a decade ago (you can stop counting, I have no issues admitting I’m 34!). That morning I woke up with a really painful flare in my right hand. Yeah, that’s right, in my entire body-head to toe-I only had pain in my hand. Not a big deal right? WRONG. Not only was the pain in my hand excruciating, but I’d also lost all motor function there. And I got to learn this the slow and hard way.
I woke up, and started my morning routine… Walked into the kitchen to turn my electric kettle on so I could get to caffeinating. I usually put my two cup French press out the night before, along with my coffee cup, milk frother, and Pyrex measuring cup (to heat milk in), to set myself up for the following morning just in case I wake up having a bad day.
My sisters friend Faith, got me super addicted to drinking cafe au lait last Christmas, which is basically hot coffee with steamed frothy milk on top. Of course I don’t have the super expensive Nespresso machine that she does, so I can’t make espresso style drinks at the drop of the hat. I can, however, do the next best thing by making my coffee in an individual French press, and then warming up the milk in the microwave and using a cheap milk frother I found at Bed, Bath, & Beyond for $22 to make the frothy milk that goes on top of the hot coffee. It may not be a fancy drink like you get in a cafe, but the fact that I can make a cafe au lait in my own home in about 10 minutes (as long as my hands are cooperating) is pretty miraculous. And delicious!
Well, I didn’t think I was having a bad day til I went to pick up my electric kettle, full of just-boiled water, and nearly dropped the thing. Pain shot up my right wrist and forearm. It wasnonlynthen that I realized my right thumb knuckle was discolored purple, and the flesh around the joint was shiny and stretched. My hand looked much larger than normal, every joint puffed up from the inflammation. Definitely not what I was expecting.
But I figured it was just a regular pain flare, I get them all the time, and I should be able to just deal with it. They truth of the matter was that I thought I could handle what I figured would be a frustrating, albeit painful, nuisance. Boy was I wrong. You may not realize it now, but you use your hands for EVERYTHING.
All day I was dropping things that ended up being too heavy for my pained hand to deal with (insert broken plate here). I had to switch hands to do the simplest of tasks: opening cabinets and the fridge door, using a pen/pencil to attempt to write anything (what a joke!), making the bed-can’t pull the sheet if I can’t even grip it! Everything was so difficult and painful. Not to mention how nearly impossible it was to shower with only one hand! Especially when it’s the wrong one! I had to use my teeth to bite my shower gel bottle to get the stuff onto my wash cloth. Shampooing my hair was painful at best. And then when it came to wrapping my hair in a towel? I might as well have made a video and sent it in to America’s Got Talent for all the embarrassing maneuvering that took place in my tiny bathroom.
I was suitably humbled.
A few years ago (well maybe more than a few), a movie named Constantine was in theatres. It was an instant hit for me since Keanu Reeves, my future husband, was in it, and the genre was sci-fi/fantasy, which I LOVE. I think it may even have been one of the first movies Shia LaBoeuf was in as an adult, pre-Transformers days for sure. I know, I know, get to the point Christine! Anyways at the end of the movie, Constantine slits his wrists in attempts to get the devil to appear so he can talk to him. And once the devil does in fact appear, (excellent entrance by Peter Stormare by the way!) he attempts to light a cigarette, but finds that he can’t. Loss of motor function, due to his cutting of the nerves and tendons in his wrist, made it impossible for him to use his lighter. I’m not sure why that particular scene seemed to be on a repetitive loop in my mind yesterday, but the fact of the matter is, that it was. And all day I was cursing(often out loud) on my inability to use my hand. Something so easy, so small, how could I not use it?? Agh the frustration!
Getting dressed? A nightmare! Do you know how difficult it is to put a bra on when you can’t even hold one end up for the other to clip onto? I’ll answer that one for you- VERY. And it wasn’t just the fact that I couldn’t hold or grip things. The pain was so harsh that I couldn’t bear the weight of anything. The smallest of objects, a book, or the tv remote, we’re just too heavy!
I very, very, slowly attempted to make breakfast. With two hands, poured the hot water into my French press to get the coffee brewing. It took two attempts for me to open the refrigerator door, after finding I couldn’t pull it open with my right hand (GRR!), so I could grab the milk for my cafe au lait. While my milk was microwaving, I went to the cupboard to grab a plate for my toast, and voila!! Smashed to pieces on the floor was one of my small plates. I had already forgotten that I couldn’t lift practically anything, and the plate proved to be too heavy. I grabbed it out of the cupboard and hadn’t taken two steps back towards my kitchen counter where my toaster was happily toasting my English muffin, and it literally just dropped from my fingers onto the floor, where it broke into millions (yes I’m exaggerating) of pieces.
Agh how frustrating!! All day I came across normal things that I couldn’t do. And when I say all day, I really do mean ALL DAY. The pain never let up, the flare never abated. It was continual and never ending it seemed.
In the late afternoon I went to meet my oldest sister at a local coffee shop near my house. Getting dressed for that little trip took ages. In fact, I ended up ditching my denim shorts with it’s annoying buttons and zipper for the easier skorts option where I could just pull them on and off. Though to be honest, it was still hard even then, as I still couldn’t grip anything with my right hand, so I sort of had to shimmy into them. Anyways… I met my oldest sister for coffee and once again struggled with a plate when I had to carry my latte in its saucer to a table. My day of struggles seemed never ending!
And after coffee with my oldest sister, I had dinner with my youngest and her fiancé. The hilarity of my unusable hand continued. I couldn’t use chopsticks with our takeout dinner, I couldn’t hold the glass of iced water I had requested to drink with my meal, and later when attempting to light a candle, I encountered the same problem as Constantine had faced when trying to use a lighter. IMPOSSIBLE!
By the time I got home at 9pm last night I was ready to call it a day-or hell even call it a month. I couldn’t believe how hard life was without the use of your right hand. And the thoughts that swam around in my head all day as I dealt with this at first nuisance, but eventually burden, came to light when I realized that some people deal with his permanently. Think about all those soldiers out there fighting for our country every day, putting their lives (including body parts) at risk. Coming home with missing limbs, hands, not to mention serious mental stress and anguish. And here I am bummed out that my hand hurts from an arthritis flare.
Life can be a real handful, especially when working with only one hand! But I guess I just have to push through and make the best of what I’ve got. Sure, it can be painful, really, really painful! But I have to remember that it’s just one day. One day I struggle with. I think I can handle one day of stress and nuisamces, when others don’t get that option.
I didn’t sign up for Rheumatoid Disease. I didn’t choose it. I didn’t ask for the pain and the hardships and the struggle. But at the end of each day, when I think about what my life is like now, I remember that I’m grateful for what I still have.
Air in my lungs to keep me moving, two feet that take me places I need to go, two hands that feed me and help clothe me, and a voice to remind myself and others that it’s not the struggle that keeps us going til the end, it’s the memory of the journey and how we tell it that gets us there. I am grateful for all that I have, and I will continue to share that for as long as I can.
Thank you to all of my friends and family and readers and supporters for all that you have done and given me so far. I appreciate you. If you or anyone you know would like to help further, you may visit my web page at http://www.gofundme.com/sixthousandsteps