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One year ago 

One year ago, I was sitting in my favorite coffee shop with my mom, drinking delicious lattes from ceramic cups. Despite the intense summer heat in Hawaii, I was always in the mood for a Brue Bar latte. That day was extra special though, a significant moment in my medical history. It was the day I received my approval letters from Social Security. 

It had been just under two years since I had filed for federal disability. Two years, that to me, seemed like a lifetime. I still shudder at the thought of how broke I was during that time, how desolate. I lived with two sets of generous friends, who allowed me to stay in spare bedrooms for months on end as I waited. I lived on a very small state disability income of only $248 a month. That had to cover bills, medications, transportation, and incidentals. I became the queen of budgeting. Even my pain therapist said I could draw oil from rocks.

So, one year ago, when I received the letter telling me I was going to finally get enough money to live off, money that would help pay for rent, groceries, medical supplies, and more, I was quite overwhelmed. I cried, right there in the coffee shop, in front of my mom. My mom was probably the only person on the planet that understood the significance of these letters to me. She took a picture of me from across the table, one shaking hand holding the letter, the other wiping tears from my eyes. I was still very overweight from the continued steroid use at that point, and I was heavy in the face. It’s probably one of the most memorable and significant pictures of myself that I have. 

One year ago, I received Social Security benefits. A lot had changed since that day, and I’d like to think that it had to do with the positive effect this has all had on me. I’ve dropped a significant amount of the steroid weight, and I recognize myself in the mirror again. I’m in a new county where I’m finally getting really good medical help. My moods have changed, and I’m more often happy than not. 

One year ago I received a letter that would change my life. It did.

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Running out of spoons

I’d been sitting in the blue squishy armchair for what felt like an hour, though more likely it had only been fifteen minutes. There are only four of those armchairs, and they are coveted, being the only actual comfortable chairs in my pain management clinic’s waiting room. The rest of the chairs in the room are made of black metal and hard gray cushioning, and no matter what length of time you sit in them, be it an hour or only five minutes, you will always always  get up in pain and discomfort. 

Today the chairs were almost empty, and I got my pick of all four, choosing the largest and squishiest on the far right near the door. It was late in the afternoon, much later than I’m usually there, and most of the patients had already been seen. I was mentally kicking myself for agreeing to an appointment that late, usually at that time I’d have been home napping.  God, I wish I was napping. 

Today’s outing was a mistake, I knew this now. I knew it when I was on the crowded bus making my way here. I knew it while traversing the five blocks from the bus stop to the office building complex, especially once it started to rain. I knew it once the wind snapped back my once sturdy umbrella, rendering it broken and useless. See, the problem was that I’ve been sick for days. No, not my usual sickness of arthritis pain and fatigue, though it was included. But actual sickness, like a cold, or in my case a sore throat with fever. I’d spent the whole weekend in bed, barely making it up to use the bathroom and make cups or tea, I couldn’t even remember when I’d eaten last. I was feeling so shitty yesterday that I’d had to cancel/reschedule three appointments, because I physically didn’t have enough energy to put clothes on, let alone catch the bus downtown. Usually, I have help from my caretaker on days like yesterday…  But a few weeks ago I’d insisted that they take a vacation from looking after me, assuring them that I’d be fine. I mean what could go wrong in one week right?

 …..sometimes I wonder if I jinx myself when bargaining with fate like that.

On a normal day, I would have known better than to leave my apartment feeling so bad. But today was a special day, not one that I could skip. See, today was when I got my prescription for my pain management medications. Since they are severely controlled substances, you can only get a 30 day prescription at a time. My clock had been ticking down, and I have only two days worth of medication left in my medicine cabinet. I could be on my deathbed and I wouldn’t miss that appointment. It’s as important as paying rent on time.

So today, a day where I’d woken up feeling like I was flattened by a steamroller in my sleep, I left my house to travel thirty-five minutes downtown and sit in that room, in the blue armchair, waiting. Dripping wet from getting caught in the rain with a now broken umbrella, waiting.  Shivering cold in the office’s icy air conditioning, waiting.

Ever heard of Spoon Theory? It’s a theory that was brought to life by a woman named Christine Miserandino, whom has lupus. Christine tells a story to her friend, explaining what life is like living with lupus, but it really could be an explanation for a myriad of chronic diseases, including my Rheumatoid Disease. To truly understand what we go through, give it a read here. It’s the best description of what I go through on a day to day basis and you’ll need it to understand the rest of my writing.

Any day that I wake up sick, or in the middle of an active flare, or exhausted from a restless sleep, is a day I wake up on borrowed time. It’s waking up with half the spoons of a regular day. Though for me, there really is no “regular” day, because every day I wake up I’m in some measure of pain. Today, was an especially bad day. By the time I’d reached the pain management clinic offices, I didn’t have many spoons left, maybe three, four if I got lucky. In fact, I was pretty worried about making it home at all.

After what seemed like an extraordinary amount of time, I was finally called in to my doctors office. I’d assumed today would be like any other day, just the regular picking up of my script, ten to fifteen minutes top. Alas, it was not to be. I was met by a new attending nurse, whom told me I’d have to give a urine sample before getting my prescription. This was new. I’d never been asked to do that in the three years I’d attended this office. To be honest, I was fairly insulted. This test was to insure I’d been taking my pain medications, and not doing something more sinister like selling them on the streets. Did they really think after all these years of my being on intense pain medications, medications that not only kept me mobile but also alive, that I’d just throw it away for some cash? Ugh…

By the time I left the clinic it was an hour later than I’d expected. It was also unfortunately still raining. It was going to be dark in just under an hour, and I was exasperated because I still needed to stop by my local pharmacy and pick up another prescription that I was already out of. Had I not been so sick over the weekend I would have picked it up already, but I’d been in too much pain to leave the house. Unfortunately making it so that I had to pick it up today after my appointment. This could have already been taken care of, and I could have been on my way home by now had that stupid new nurse not made me take that ridiculous urine test. 

It took what little energy I had left to walk those five blocks back to the bus stop. The rain slowed me down, my broken umbrella doing little to shield me from the wet weather. I was waiting at the crosswalk  when my bus rolled past. No no no. No. I hurried across the street, trying to be careful not to slip ( I did not need to deal with a broken bone of all things right now), and put up my hand trying to signal the bus not to leave. He was right there. But he left. When I was not two feet from the back of the bus, where I’m sure he could see me in his rearview. Thanks bus driver. Thanks.

By the time the next bus to my suburb came, it was dark and still raining.

 Pneumonia. I was surely going to get pneumonia.

 I could hear my moms voice in my head telling me to catch an Uber or Lyft, and man would I have loved to, had I enough money in my bank account to pay for it. But tomorrow  was rent day. I didn’t even have enough money to pay my gas or electric, or my internet and phone. Hell, I didn’t even have enough money to supplement my $90 monthly food stamp allowance. I’d just gone two days without gas, which meant no hot water and no ability to cook food. Ride shares were a luxury I couldn’t afford. 

The bus was packed, it being rush hour and all, and the floors were slick from the rain. I had to stand for the first ten minutes, before finally securing a seat in the sideways facing disability section in front. I don’t usually like sitting there, as riding sideways makes me nauseated, but beggars can’t be choosers. I was beyond exhausted. I maybe had one to two spoons left, and if I didn’t really need to pick up that prescription I would have caught that bus right to my street. But I knew I couldn’t live without my medicine. Waking up without it would make things so terribly worse.

Once at my destination I bought a bottle of water, drinking half of it down before continuing to the pharmacy counter, hoping to alleviate the nausea I inevitably got from the bus ride.The liquid revitalized me just enough to stand in the long line that had accumulated for those “picking up”. I paid for my prescriptions, dropped off the new ones, and headed back to the bus stop, elated that my day was so close to the end. I allowed myself to fantasize about a hot shower and a cup of Irish breakfast tea. 

As I watched my bus drive past me as I turned the corner, an offer of a million dollars couldn’t have stopped the tears from falling. I was so tired. So this is what being stuck out in the world without spoons felt like… I don’t even remember sitting down, but I must have. I wearily pulled out my phone, looked at the bus app, and was relieved to see that three buses were scheduled  to arrive in the next fifteen minutes. I could wait fifteen minutes. And then I would be home, under that hot shower, and then snuggled up in bed with my cats and that hot cup of tea. It sounded like heaven at this point.

I waited. And I waited. After thirty minutes no tears fell. I don’t think I had the energy left for any type of emotion. I stared down the dark street, knowing that all the way down there, six blocks away, was my warm and dry apartment. I don’t know if I borrowed spoons from tomorrow, or just willed myself with the raw human need to not die on that bench, but I got up and started to put one foot in front of the other.

 I don’t know how long it took me to walk home from that bus stop. On a good day, I could traverse those six blocks in about ten mins. But today was not a good day. I don’t even remember the actual walking. Just one foot in front of the other. My wet shoes making squishing noises with each step; I know at some point my phone beeped. It was a text from my mom, telling me she had a cold. I responded that I was walking, and put my phone away. 

The next thing I remember was sitting on my bed, wrapped in a towel, still warm from the shower. My hot water kettle chimed that it was ready. My phone was beeping. My mom was telling me how sick she had felt all day. All I can remember is feeling so profoundly jealous of the people in the world who have someone to look after them. Someone to tuck them into warm beds, bring them cups of hot tea, and medicine.

I looked back on today, realizing my new reality, and cringed. A reality I had actually agreed to. 

“Go and live your life”, I’d said. 

“I’ll be fine on my own, I’m sure.” 

In fact I was so sure my disease couldn’t get any worse. I’d seen it all this year. Hospitalized for reoccurring Pericarditis, multiple ER trips for violent pain flares, chemotherapy, lymphoma, menopause, and now the new sleep apnea diagnosis… Surely it wasn’t going to get worse, right? Why do I always underestimate my disease? Why? 

And then in the first week I attempt to do this on my own, to show everyone who’s been pushing from the beginning, saying “Why can’t she look after herself?” or “She’s an adult, why does she need help?” or “She’ll be fine on her own”

Then…. This happens.

Have I shown you the truth yet? Are you ready to accept that my disease isn’t going away? Are you finally ready to open your eyes and see that not only will this affect me for life, but that it will just get worse and worse? That I need support? And not from some nurse that checks in with a daily phone call, but someone who physically checks in on me, to make sure I wake up every day. To make sure that days like today never happen again. Someone who helps me to my doctors offices, or insures I get my prescriptions filled on time, and to see that I’m eating something when my flares keep me bedridden for days on end. Someone who helps me keep a roof over my head, and food in my fridge, and my gas from being turned off.

Who is that person for those of us who have no husbands or wives, no long-term partners who can watch over us? Who is that person when a family member denies your disease exists?  Who is that person when the one person that does look after you has a partner who doesn’t understand this, nor do they want to? 

Who is that person when you’re facing being alone indefinitely? 

Who am I going to turn to the next time I run out of spoons and I’m not just a few blocks from home?

Who am I going to turn to? 

Who is left when the spoons run out?

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.

 

 

Sesame Street Lessons

As an 80’s kid, I grew up on watching Sesame Street, as well as other parental favorites like The Berenstain Bears, Care Bears, Fraggle Rock, and The Wind in the Willows. You know the drill, if a parent is sitting their kid in front of the box for a couple hours, it better be G rated and have good morals and lessons learnt! At least that’s how it was in the 80’s in my neighborhood of Tantalus and Makiki Heights. You could watch a good program, or you could play outside. Those were the options. No video games, no trips to the movies or the local Chuck E. Cheese (which was the only place those days that really had any games and ball pits). Wholesome fun. And if you didn’t come back with at least one scratch or bruise on you, and the elaborate adventure story to back it up, you clearly hadn’t had a fun day.

I can’t say that Sesame Street was my favorite show, but it was definitely the most watched since it aired every day. And to this day I still have memories of all the lessons learnt from that program. I learned about sharing a tuna sandwich from Big Bird, homosexuality from Burt & Ernie, how to count from Count von Count, and that more than anything I wanted Snuffleupagus as a pet. Good times.

One particular skit popped into my head the other day while at my new Rheumatologist’s office. I was marveling at the fact that my doctor was once again doing a thorough physical examination of my body and joints. My old Rheumy would barely touch my joints every time I came to visit. In fact he hadn’t given me a thorough look over since our first appointment three years ago. And yet here was my new (fantastic) Rheumatologist, on my second appointment, giving me a full physical exam. I loved this woman!

When we got to my arms, she asked me to extend them, and upon seeing that I couldn’t straighten them, asked how long it had been since I stopped being able to. The question carried my memory directly back to a Sesame Street skit about two characters who didn’t have elbows. And because they didn’t have elbows, they couldn’t bend their arms to eat the fruit they had picked. It was, of course, a lesson in working together. Finally, they fed each other the fruit, instead of trying to figure it out on their own. Problem solved, lesson learned. It’s amazing that that skit has stayed in my mind all these years.

Doesn’t of course change the fact that I can’t straighten my arms. Nor the fact that I haven’t been able to in over a year. The swelling in my elbow joint has become to much, and the joint is too stiff and tight. You wouldn’t think that matters much, but not being able to straighten your arms is really quite annoying. Not to mention the stress that you feel when you see your own body part unable to perform as it should.

Every day we are taught lessons, or even just remember old ones from days already lived. I only wish I knew what lesson my body thinks it’s teaching me by not letting me straighten my arms….

Please visit my donation page for more information on my disease and support options, here

Absurd Things To Be Jealous Of

I can’t tell you how ridiculous it is when someone tells me how jealous they are of my situation. I’m sure they don’t mean my illness, but what they assume my day to day life is like, but that’s what it comes out as.

“You’re so lucky you get to sleep in every day!”
“I wish I could take naps whenever I wanted!”
“You’re so lucky you get to use that handicap placard!”
“I wish I didn’t have to go to work!”
“I wish I could get free food!”

To set the record straight, it’s incredibly insulting to hear comments like these. Most times it feels like a slap in the face. Do these people think I want to live like this? That I enjoy it?

First of all, I don’t get to sleep in every day. Most days I’d be lucky to sleep past 5am. That’s because at 5am is when the first pains of the day start. I take my morning meds, and then in lie there in bed willing them till kick in so that I might be able to move for the rest of the day. If I have sleep in past 5am, it usually means something is terribly wrong. Maybe I have a fever, or extreme exhaustion, or on the verge of a new illness or diagnosis, either way it’s not something to be excited over.

As for naps, I’m sure while most people would love to get an afternoon nap in each day, I look at mine with dread. I have medications-induced Narcolepsy. This means I have no control over my body and when it falls asleep. I could be mid-conversation, holding a hot beverage, or even standing at a crosswalk, and just doze off. Take a moment to realize how dangerous that can be for me. I have on several occasions spilled steaming hot drinks on my lap, dozed while walking and hit things, and thank goodness that I snapped out of it that day on the road. I could have been hit by a car had I fallen into the road. And taking scheduled naps do not help. Getting enough sleep has nothing to do with this.

The reason I was issued a handicap placard is because sometimes it’s too painful or exhausting to walk across a parking lot to a store or shopping center. I only use it during these instances, and don’t abuse the privilege if I’m feeling ok. Please remember that doctors only issue these to patients whom are legitimately disabled. This isn’t something you can just pick up at the store. And it’s not “super cool” to have one. In fact it’s a big blue reminder that I’m very sick.

Gosh, I miss work. I miss the camaraderie of my fellow coworkers, I miss my desk, I miss my clients. It sucks not being able to work. Sure, I admit that the first couple months were nice, a little rest from the daily grind. But the truth of the matter is that I like working, I like keeping busy, and I like feeling as though I accomplished something at the end of every day. Please don’t tell me how lucky am to not have to work. I guarantee if you were in my shoes you would understand how very boring and depressing it is to not work. And how incredibly hard it is not having a paycheck.

Which brings me to the complete and utter stress of having to use food stamps and financial aid services. I can’t stand not having my own money. Budgeting when you have next to nothing is a job in itself. I am given a very very small amount of money to live off of each month and that’s not spending money. It has to cover my medical bills, my utilities, my gas bill, my phone bill, household items like soap, detergent, and toilet paper, and money for incidentals like parking fees, stamps, batteries.

I never have enough money to cover these things. In fact each month I’m about $200 short of what I need to cover basic living expenses. Which means that each month I have to give up certain necessities, usually I rotate them. I can’t always have my phone on, $100 is a lot of money, so sometimes it’s not on. Medical bills are in collections because I can’t pay them. Mom has to help me with cat food and litter sometimes. I’ll admit I’ve taken toilet paper from public restrooms before because I was out at home. I accept odd bits and pieces from family and friends’  pantries and fridges. My best friend buys me milk from time to time. For clothing I shop only at Goodwill and Savers, and other used clothing stores, and only if my steroid-fat body is growing out of the ones I have, or I need some more summer dresses to survive the heat of the summer and my hot flashes. So when you do see me spending money, say at a drugstore or treating myself to a bubble tea at the local cafe, know that it was not on a whim, but carefully planned and budgeted and sacrificed.

Food stamps never are enough for the month. It only covers food, nothing hot, and nothing non-food related like foil or sponges. I try to spread it out through the month, and only shop certain items at certain stores. You learn where everything is the cheapest, all it takes is patience, and time. Meat at Times, dairy and fresh produce at Safeway, canned and dry items like pasta and cereal at Wal-Mart, gourmet treats at Whole Foods, Costco for bulk items like frozen fish, fruit, and eggs, and never ever Foodland because they’re overpriced on everything.  And if I’m between appointments, and need a quick snack or bottle of water, 7-11 is always a good fall back, as long as it’s not out of the hot case.

Do not tell me you wish you were in my shoes. You don’t. You would be appalled at the state of my shoes. Be happy with your income and your freedom and the fact that you need to walk further in the parking lot. I am jealous of You. Oh to be well again. Oh what a wish that is.

 

 

If you would like to help me with my day to day, please visit my donation campaign page at:

Christine Lilley’s Life Fund

Or you can email me at http://sixthousandsteps@gmail.com