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He didn’t want me to love, and so I never did

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?

Wondering

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?

The Dating Game 

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” is not the question you should be asking 

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.

Support Isn’t A Competition.

I read a great quote online yesterday, which prompted me to write this blog today. It was one of those posters that Word Porn posts daily on my Facebook feed, and instead of scrolling down past it like I do usually, this one caught my eye. Here it is…

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This one really spoke to me, because I feel like I deal with this on a regular basis due to the nature of my disease. And this particular statement I feel like I’ve literally been living.

Rheumatoid Disease has plagued my body for three and a half years now. Endless years, it seems sometimes, that I’ve dealt with this indescribable pain, whom no one can fix. I’ve tried so many medical treatments, pharmaceutical and homeopathic. I’ve attempted every fad diet out there, all proclaiming to be the “cure-all” for my disease. You name it, and I bet I’ve tried it! Even going as far as using essential oils, sleeping with healing rocks, and attempting to meditate the pain away.

I have spent countless hours in frigid medical offices, waiting for yet another “check-up” appointment. Or another visit where my doctor will inform me that now do I not only have the worst case of Rheumatoid Disease for someone my age in Hawaii, but also of all their colleagues’ patients on the mainland as well. Gee, that’s some great news, I’ve always wanted to be the best at something. I could never have imagined it would be concerning a debilitating, incurable disease. I’m so lucky!

I’ve spent more time with my Rheumatologist and PCP than I have with some of my closest friends. Truth be told, that could also be said for most of my family members as well. And I’m not saying that’s something bad, it’s just my reality. My week’s schedule is usually broken down in three main priorities: first comes doctors appointments, then work related training/events/prospecting, then family time, and friends and social engagements can be worked in after that.

If you really look at my priorities, you can also see how important my health is to me. I’m 34, about to be 35 in one month. I don’t want my disease to define me, and to accomplish that, I need to work hard at finding a way to coexist with it. I have to figure out how to live with my disease in a way where it doesn’t rule my life and dictate who I am as a person. And to do that, I am 100% committed to finding a medical treatment plan that works for me.

My second priority is my financial independence. I now receive a small monthly siphon from Social Security, but it is nowhere near enough to live off of. So I had to find a part time job that I could do without hurting myself, or worsening my disease. That came in the form of direct sales with Rodan + Fields, which fortunately fits my needs perfectly. I work from home, hell, most days I work from bed, and I make my own hours. I’m my own boss, and have no one above me causing me stress. It’s almost completely social media and word of mouth based, and works perfectly with my retail background. I’ve only just started, so I’m not making any real money yet, but I will in time, and I’ll be financially secure for my future. And the best part is that I love my job. I love helping people, and making them happy. So, really, it’s a Win/Win.

My third priority is my family. No matter what is going on in one’s life, it’s always nice to have family to fall back on. Spending time with both sides of mine (I was a child of divorce, so I get two), is something I try to make time for regularly. Now, I’m not saying that my family relationships are perfect, far from it. But at the end of the day your family doesn’t change. You don’t get to swap them out if you have a fight, or don’t see eye to eye. With family you’re committed to the good, the bad, and the ugly. And I have dealt with all of those memories from both sides of mine.

Although, this is where the aforementioned quote comes in to play.

I understand that dealing with people with disease is hard for some. Knowing a friend, or even an acquaintance, who is going through an intense medical situation can be tough. Even dealing with a lesser medical situation, like maybe reoccurring headaches or acid reflux, can be hard for some to process. We don’t know how to react, or how much empathy or sympathy to have. It’s daunting for some people to deal with those who are sick. And even more so if we are talking about incurable diseases, cancer, or any other life threatening medical issue.

In my own medical journey I’ve actually lost friends because of my illness. Not because they were scared of “catching it”, Rheumatoid Disease isn’t contagious. But mostly because they were at a loss of how to handle it. They didn’t understand the disease, and why I was so sick, and why after all my treatments I wasn’t getting better. And instead of asking me about it, and attempting to understand what I was going through, or asking how they could be supportive, they instead pulled away. Yes, it initially hurt my feelings, but at the end of the day I have learned that I’d rather surround myself with supportive people. People who want to be in my life, not those who feel they have to be. I think that goes for pretty much everyone, healthy or not.

I’ve personally found, though, that support can be a double-edged sword. You would think that anyone going through an intense illness, like mine, would welcome support of any kind. Through the assumption that any help at all is still helpful, right? WRONG. Support and help is only helpful if it comes from a good place. However, in my personal experience, support is often not without strings.

I welcome and appreciate any kind of support towards my person, my illness, my newfound career, and my journey in general, as long as that support is given freely. What I mean by this is that it’s given without expectations of a reward, or a guilt-laden reciprocation. Just like the quote says, “I don’t engage in acts of kindness to be rewarded later,” I don’t want to receive support with strings attached. An example of this might be a ‘You scratch my back, I’ll scratch your back scenario”. Or making comments like, “Well I helped you with that one thing last week, so….”

No one wants to feel like they’re being used. But expectations put on support is just that. It’s support with strings attached, and I don’t want any part of that. If you need help with something, just ask. But thinly veiling it as “support” basically makes the receiver feel like shit.

If you want to do something nice for me, or anyone, then do it. Not to get something back from it, or to make yourself feel better by showing others how “supportive” you are. If you want to be seen as a good person, then do good things. And leave it at that. Be kind. Be generous. Be good. Not for others. For YOU.

Giving me support in my illness isn’t a competition on who can do it better. The best way to support me while I’m going through this hell is to just be there. Ask me how I am. Ask me if there’s anything you can do. Ask me if I need help. Ask me if I need a ride somewhere. And listen when I tell you. Listen to what I’m saying to understand, not to reply.

I feel like everything has become a lie recently. Like suddenly I’m this vessel to be used to make others look and feel better. Like “Hey, did you notice, I’m being supportive?” Or, “Look at this picture I posted of me being so supportive!”

Supporting me isn’t a competition. I’m a human being, dealing with an incurable, debilitating disease. I’m just trying to make it through each day, each week, and each month, without landing back in the hospital. I just want a life I can be proud of, and get up for each and every day. Want to feel good about yourself, too? Do something good without thinking about who it benefits, and I’ll continue to do the same.

 

 

I’ll see your seeing-eye dog, and raise you two fuzzy kitty bombs

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.

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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..

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Hands… I only get two, so back off

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!

Like today.

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?

The Reality of a Full-time Patient

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.

Tick. Tock.

I took my midday medications with a sip of water from the community cooler. Thank goodness the water was cold as ice.

Tick. Tock.

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.

Tick. Tock.

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.

 

 

 

Thank you for reading my blog. If you’d like to help support or contribute to my life resources, you can visit my webpage at:

http://www.gofundme.com/sixthousandsteps

 

Life can be a handful

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.

Suitably humbled.

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

 

 

Why I follow my doctor’s instructions

Anyone who has a debilitating disease or chronic illness, and is on a lot of medications, has had to sit through the “But what if?” conversation (or in some cases, lecture) at least once.

You know exactly which conversation I’m talking about. It usually comes from a concerned family member or friend, someone who’s done a lot of reading, especially on the internet. They back up their reasoning with a lot of memorized facts, new found statistics, and the sworn testimony of at least one doctor that you’ve never heard of, but is apparently a huge deal online or in Miami.

The content is always the same and always concludes with “Why don’t you try going off your medications for a few days and see what happens?”

Or,

“You’re just putting bad chemicals in your body. What if you just stopped taking the steroids and see how much better you would feel?”

And 50% of the time, these questions are followed with,

“It worked for this guy I read about,” or, “My good friend’s cousin went off his pain meds, and he cured himself.”

I’ve said this many times, I’m very close to being labeled as a broken record, but I’ll keep saying it as many times as it takes to get the message across: Every case is different.

What worked for someone in Kentucky, may not necessarily work for someone in Washington. There are so many factors you have to take into consideration! Do those people suffer from the same disease, and if so what is their severity level? Which medications are they on, and how long have they been on them? What kind of treatments have they tried? What are their allergies? How long have they been sick?

There is a legitimate reason why doctors tell their patients to stay on their medications. It’s not so they can make money for Big Pharma. Sure, I have heard that some doctors get certain kickbacks for promoting a certain type of drug or treatment or surgery type. But those are treatment/medications for very specific illnesses, and I can guarantee you no one is getting a bonus for prescribing Prednisone. Everyone who’s ever been in an accident or had an inflammatory issue, has been prescribed Prednisone. There isn’t some huge cover-up going on here, these doctors are just trying to help their patients. They don’t want us to get worse. But you know what would make us worse? Going cold turkey off our meds.

You know when you pick up your medications from the pharmacy, and they always make you confirm your prescriptions right then and there before placing them in the bag? That’s to make sure you’re taking home the correct medicines. And you get an essay worth of directions in pamphlet form along with it, so you know exactly  what you’re putting into your body. They list what the medications are for, possible related side effects, and instructions on when to call your doctor if you think you’re having an emergency. And I can guarantee that nowhere in those pages does it say “Yes it’s totally alright to stop taking these without consulting your doctor.”

In fact, each time I visit one of my prescribing doctors offices to get a refill, I always get a mini lecture about drug safety. They always want to confirm that I’m still taking my medications, and that I’m on the correct dose, and that I can always get my refill in a timely manner. They always express how important it is that I have an overlap when picking up a new rx, so there’s absolutely no chance I have to deal with withdrawal symptoms.

See, I don’t think these concerned friends and family really think about what it means to just “stop taking meds for awhile.” And sure, I get it. As someone who doesn’t rely on daily medications to be active or mobile or pain-free, there is no real way for them to understand what going cold turkey would feel like. They’re just reading an article and thinking, “Hmm, this seems like a healthier option.”

Well, sure! Of course being on zero medications is healthier! None of us actually want to put hard core chemicals into our bodies! But we do it to survive! We do it so we can live active lives and be mobile. We do it so we can handle living with the pain. There are so so so many reasons we take these medications, but I’d say the #1 reason is we take them TO STAY ALIVE.

I found an article online recently about going off of pain medications without using a prescribed timeline from your doctor. See, when changing medications, especially pain management drugs or corticosteroids, you need to allow your body a very slow ease off the medications so that you don’t go into shock. Especially if you’ve been on those types of medications for a long time. They build up in your body, so it’s necessary to ease off of them slowly. I, myself, have been slowly easing off of Prednisone for the last year. Now, if I were to go from say 10mg a day to nothing-cold turkey, well… I’d be in the emergency room within the first 12 hours experiencing the worst withdrawal comedown ever.

According to http://www.mayoclinic.org & http://www.medicinenet.com without slowly tapering steroids alone, (pain management medications being an entirely other matter), negative symptoms can include:

  • Severe fatigue
  • Weakness
  • Body aches
  • Joint swelling/pain
  • Dizziness
  • Anxiety
  • Nausea/vomiting
  • Low blood pressure

And harsher symptoms can include but are not limited to:

  • Adrenal failure
  • Suicidal thoughts
  • Severe dehydration
  • Migraine
  • Paranoid Delusions

Um…Yikes! No, thank you.

You want me to go cold turkey off my meds? Well, I hope you’ll be there picking up the pieces of what that looks like. Will you’d be at my home first thing to help me out of my bed and into the bathroom? Will you be there to make all my meals, help me shower and dress, maybe even wipe my ass if my joint pain doesn’t allow me to even do that myself? Will you be with me day and night as I struggle with the excruciating pain? Will you sit with me while I cry because it hurts too much to even sleep?

Because that’s what we are talking about when you suggest that I just “Try not taking them for a week.”

We are talking about cold turkey, horrifyingly painful, medicine withdrawals. Withdrawals that I doubt you have scheduled yourself to be available for. And if reading articles about how to help people with debilitating illnesses is something you’re interested in, might I suggest the following websites:

http://www.rheumatoidarthritis.net

http://www.rheumatoidarthritis.org

http://www.invisibledisabilities.org

http://www.butyoudontlooksick.com

These sites are a fountain of useful information on types of diseases and disabilities, descriptions of treatments and medications, and supportive ways you can help people who are suffering.

How do I know that I would experience the kind of withdrawals those websites suggest might happen, you may wonder? Well, because I’ve experienced it before. Twice, under the supervision of my doctors, we have tried to taper my prednisone to almost nothing. The result was a living nightmare. I ended up in the ER both times, immobile, in horrifying pain, screaming. A. Living. Nightmare.

So, no thanks on the suggestions that I should try quitting my meds “just to see what would happen”. Cause I already know the result.

Death. Death would happen.

But I appreciate your concern and support, all the same.

In my ongoing efforts to support myself whilst waiting for my Social Security benefits to kick in, I am still asking for and accepting donations for financial help. Please check out my web page at http://www.gofundme.com/sixthousandsteps