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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.

Don’t ever assume “I can” means “I will”


Inigo Montoya shared this line with us in the cult classic The Princess Bride, one of my favorite and also least favorite movies. You may wonder how someone can love and hate a movie at the same time, but it’s not much different than how we love and hate other parts of our lives… I love tomato soup but hate marinara sauce. I love the beach but hate the sand.

For me, this line is indicative of how I feel when people offer support or help, but don’t follow through on the promise. It’s in fact one of my biggest pet peeves. The best memory I have of this annoying occurrence is through the actions of a certain ex-boyfriend of mine. He would constantly make promises to me, and then never follow through. For example, on one Valentine’s Day, he told me that my gift was that he wanted to take me to this old black & white theatre in town that played old movies, kind of like an old fashioned romantic date night. I was overjoyed by this idea, reveling in the thought of how romantic my man was. I told all my friends about the lovely date he proposed, finding such satisfaction in the idea of my “gift”. But then time passed, and he never initiated the actual date he had told me about. This was when I first realized that he was one of those people that thought that stating the idea/plan/date was enough, and that initiation of said idea didn’t need to happen, so long as he felt generous enough for just offering. God, that got old real quick…

I actually use this irritating ploy as a way of gauging the authenticity of people I come across now. I no longer accept offers at face value, concluding that an offer isn’t real until followed through on. Alas, since falling ill four years ago, there is no offer made more than the promise of support. And this is where I want to invoke Inigo Montoya every time.

What exactly is your biggest pet peeve, you may ask? Hearing this:

“Please don’t ever hesitate to call me if you need help.”

“I could help drive you to the doctors office if you ever need.”

“Call me if you need help picking up groceries or running errands.”

There are more versions of these statements, but I think you get the picture. But they are always, always followed by “It’s no problem at all, I’m just glad I can help.”

Grumble grumble. 

Now I know what you’re thinking, “This girl is ungrateful. These people are just trying to help her, and she’s complaining.” Oh, if only that were true, but if it were, I wouldn’t be regaling you with this story now would I?

In the early days of my disease, I was always so grateful to hear these promises of support. They made me feel like I wasn’t alone, that I had so many people that I could count on. That is, until I attempted to collect on the offers…

Now at first, I thought I must always be catching people at the wrong time. That of course must have been the reason they turned me away. So I started to ask for help here and there when I thought the time was more convenient. But even then, my request to take people up on their initial offers of support, were often met with short responses in clipped agitated tones. Or even worse, comments dripping in disdain that sounded like they were answering a smelly homeless person, asking for an extra bucks change, as opposed to me, a friend they’d known for quite some time.

Like I said, it took me awhile…

Eventually I figured  it out, these people were just like my ex-boyfriend, and they fed hungrily on the feeling of being a benefactor from just the offering of help. For them, the offer alone was enough to make them feel like they had done a good deed. They’d offered someone in need their help, and that in turn made them feel generous and kind. Hurtling their karma in the right direction, and allowing them to feel philanthropic. But if the person in question turned around to collect on that offer, instantly they would feel annoyed and pressured, irritated that they would have to now make time to do something that they themselves offered in the first place. This annoyance that they felt entitled to feel, could then allow them to take a step back from the friendship. They could now tell themselves that they had been generous, and that it was being taken advantage of. While in reality, they hadn’t done anything but make themselves appear petty and untrustworthy.

Now I’m not saying all people are like this. I do have wonderfully supportive people in my life. People who have gone above and beyond to help me, to support me, to love me. I am eternally grateful for their kindness. Although, I do find it amusing that the most generous people are often not whom you might normally expect. But that’s okay. Their generosity and support make me realise more now than ever, that sometimes the family that chooses you, the ones that come from all walks of life, are the ones that make the most impact in yours.

But on the path of never ending life lessons, don’t ever assume “I can” means “I will”.

I wish you would

I wish you would see the real me, the me that no one sees.

I wish you could see through the denial of what I have in your mind.

I wish you would see the me that struggles every day.

I wish you would see how hard it is for me to maintain this vision of wellness that you expect me to project.

I wish you could see how hard it is for me to live with this pain day in and day out.

I wish you could see your own fear that you push onto me when you tell me to get over it or just push through, like it’s just a bad day and not the disease that is killing me.

I wish you would believe me when I tell you the truth of what is happening to me, and what my doctors are telling me.

I wish you could see that I need you more than just in name, in title. That I need you to actually be a parent, a supporter, a friend.

I wish you would stop being passive aggressive when I tell you I don’t feel well, and not brush it off like I’m being lazy or dramatic or not willing to give my all.

I wish you would help me financially as much as you help yourself.

I wish just once you would ask me if I need help, if there’s anything you could do for me.

I wish you would see how scared I am.

I wish you would see how frail I am.

I wish you could see that deep down inside I’m just a girl who never asked for this, never wanted this.

I wish you would accept me for who I am, all of me.

I wish you could accept that even though my body has changed I’m still me, and that I didn’t want to look like this. It was out of my control.

I wish you could see past the weight gain, see past the medications, and the sickness, and just love me.

I wish you would love me as much as you love everyone else, and treat me as an equal, not an outcast.

I wish you would stop pretending to the world how great you are, how supportive you are, and show how really cold you are.

I wish you would tell everyone that I asked you for help and that you told me I didn’t earn it.

I wish you would tell everyone the truth, that you have not given me even 10% of the support I really need, even though you are one of the people I need it the most from.

I wish you would love me like everyone thinks you do, how you tell everyone you do. I wish it didn’t feel like a lie.

I wish you knew how hard it was for me to get out of bed today, how painful it was just to grip the sheets and pull back the covers.

I wish you could understand how hard it was to have someone help dress me, how hard it is as a 35 year old woman, to have someone else help me put my underwear on.

I wish you could see how I struggle to do even the simplest things, like pour myself a glass of water, or even lift the glass to my lips.

I wish you could see the real me, the one that is in pain every day and just wants this to end.

I wish you would treat me with the love and respect that I deserve, and give me the support you tell everyone you give, the support you have deluded yourself into thinking you give.

I wish everyone saw the truth of what is happening to me. I wish people truly understood and believed me when I tell them I am dying. I am truly dying. It could be a year, it could be ten. But the truth is I will probably go before almost everyone I know, including my parents.

I wish you would all just understand how hard that is for me to process. How hard I struggle with my mortality. How hard I struggle with everything.

I wish you all knew how little I have in this world. How I am close to bankruptcy, that I have bills piling up, and that I’m about to lose the roof over my head. I wish you could understand how many people I have in my life that could change my circumstances in a minute, keep me from homelessness, truly take care of me, but choose to do nothing. People who lie and tell everyone how supportive they are of me and understand how ill I am but would rather spend money on trips, shopping, eating out, and material things. If only they could look inside themselves and see that if they sacrificed one present to themselves, I could be housed for a year, or for life.

I wish you could understand how little and terrible they make me feel when I ask for even the smallest amount of help. I wish you could understand that they told me I didn’t earn their love or their help, and that they don’t need to take care of me.

 I wish you could understand that this is my reality. It has been since before I was sick. That this is what I’ve dealt with for years.

I wish I wasn’t dying. I wish I could be happy. I wish the world I knew wasn’t the world I live in.

I wish a lot of things.


My last trip to the hospital ^

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?