For those who know me, I have a severe case of Rheumatoid Disease. A case so severe in fact that I’ve had doctors tell me to my face that they’ve never seen test results like mine, and going as far as to say I’m the “worst patient they’ve ever dealt with”. Yeah, thanks for kicking me when I’m down…
When I was diagnosed over three years ago my doctors used to throw around phrases like “When you go into remission…” and “Don’t worry, you’ll only be on steroids for a few months”. We were so hopeful and optimistic back then. So blindly optimistic.
But now after the years of disappointing x-rays and blood tests, failure after failure of one medication to the next, and 95+ pounds of weight gain from the steroids I was only supposed to be on for a few months, well that blind optimism feels more like blind stupidity. Of course, I know that these things are not my fault. I have an incurable disease that has taken a life of its own. My life, to be exact. It’s claimed my body for its own, stuck a flag in my inflamed flesh and renamed it Rheumatoid Disease Poster Child. What a sneaky bitch.
And the worst part of all of this is I know it’s winning. Every day that I wake up and feel like shit, knowing that before I even open my eyes that it’s going to be a very bad day, I know that it’s winning. Even on the less often days where I wake up feeling kind of okay, when I’m able to shower and get dressed without the aid of another, and actually make breakfast and enjoy eating it, deep down inside I know it’s still winning. Because that’s just one day in a sea of bad ones.
Two months ago, after a year of deliberating, I made the decision to try a very aggressive form of Chemotherapy to treat my disease. The reason it took me a year to decide was because of a side effect that was really really scary. Sure, there were the usually chemo side effects that also didn’t sound great…nausea, vomiting, hair loss, rapid weight loss or gain, possible infections, possible cancers, the list really goes on… But the worst one of all was that it had been known to cause brain tumors in some patients. Now of course they told me this was rare and only happened in a small percentage, but my issue was that I am ALWAYS that small percentage. Since I was little I always ended up being that rare statistic that no one accounted for. The “anomaly”. And I feared if I took this chemotherapy, I would get this rare brain tumor.
It wasn’t until we had exhausted every other medication and treatment out there, and failed, that I started to seriously think about doing the same thing chemotherapy. And in the end, I agreed, and set up my infusion date. Because of the strength of the medication and the weakness of my own body, the infusion would be given over the course of 6 hours. There would be two sessions, two weeks apart, and then I’d wait up to six months for the next one.
On the day of my infusion I was pretty nervous. I got over it real quick though when I was shocked and surprised to find that my father had decided to visit me at the infusion clinic. Til this day he had not attended one doctors appointment, treatment session, or joined my mom at the ER during the many times that I was there. And yet, chemotherapy seemed to be what broke the camels back. Perhaps, he had finally realized how very real and very life threatening my disease was. Or perhaps there was no good surf that day..
During his two hour visit, I went through a few blood tests, and waited around while they poked and prodded me with needles, finally finding a port site they liked for my infusion. Once he left, the infusion started. And the last thing I saw before I fell into a heavy drug induced nap, was my mom by my side, holding my hand in support, as she did everytime I lay in a hospital bed.
When I woke six hours later they were removing the infusion port, and soon after I was hobbling down to the unisex bathroom to change out of my comfort clothes and back into regular street clothes. Mom and I picked up something to eat on the way back to my house, and once there I fell back asleep and continued to sleep for another 15 hours. The next morning I vomitted for the first time, which wasn’t all that surprising, given the amount of chemo that went into my body the day before. But besides that I felt fine. Better than fine actually. I believe I even saw a movie with a friend that day. I remembered thinking, “Well this isn’t so bad, I got this!” How I only wish I could have remained in that happy state.
The next morning I woke with a jolt and I knew something was wrong. My mom had come over to check up on me, and before I could even greet her I was in the bathroom throwing up. As soon as I emerged I started to feel a pain in my chest and a tightness in my throat. Fearing that I was having a bad reaction to the chemotherapy, Mom gave me some baby aspirin and water and we waited. A few mins later I was fine, and she took me out to breakfast to get something in my stomach. We had planned to go shopping afterwards, but I felt so tired after eating that I opted to go home and get back in bed. I fell asleep within moments.
Later that afternoon, I woke not too long after receiving a text from Mom asking if I was ok. Even while still just laying in bed, I knew that I wasn’t. I asked her to come over right away. Over the course of the next twenty minutes I had what felt like a heart attack. I knew better though, this had happened before. I have reoccurring Pericarditis, a painful condition where the sac around your heart becomes inflamed and fills with fluid, essentially drowning your heart. The process feels exactly like a heart attack and can last for up to an hour, and can occur several times in a day if untreated.
The pain was excruciating. I couldn’t breathe, it felt like an elephant was sitting on my chest. I felt nauseated, but I could t throw up. My jaw was stuff and unmoving. And my chest felt like thousands of needles were being slowly pushed into it. By the time my mom arrived an hour later, I was dressed with a bag packed, ready to got to the Emergency Room.
When we first got there, we were not met with anyone who seemed to understand the concept of “emergency”. And it wasn’t until I started to have what appeared to be another heart attack in one of the waiting rooms that they did finally take me seriously. Or maybe it was the fact that was my mom was crying and shoutings and begging one of the nurses to look at me and help me. Finally after what seemed like forever, although maybe it was just an hour, I was taking into a room and given an EKG. After another long wait, I was taken into a room that was very long and filled with many people, divided by curtains. Doctors and nurses came and went, I was given a CAT scan and many blood tests, and finally after a very long time the doctor came back with the results. Yes, it was Pericarditis, and No, I could not leave.
I was admitted into the Observation Ward overnight. Because it was a Saturday, and the machine that could in-depth test my heart could only be operated on a Monday, I was told I would be there until at least then. 48 hours in the hospital, it would be my longest stay at Queens yet.
It was during my second night that shit really hit the fan. I had gotten up in the middle of the night to use the bathroom, and I guess the strain on my heart was just too much for my body to take. It started as just a flutter of activity, like I had walked up a long flight of stairs, or had a lot of caffeine. But it progresses to a sharp stabbing feeling within moments. I rang for the nurses, and after what felt like a ridiculous amount of time, someone finally came to check on me.
As a side note: The Queens Observation Ward had the worst response team ever. Everyone working there is way too relaxed, and they seemed genuinely surprised if one of their patients needs actual help. Which by the way, is why all of us were there.
While I’m not ready to talk about what happened to me that night on a personal level, I can tell you that the doctors informed me that I was close to death. Had I not been attended sooner and given medication I may have not survived. The last thing I remember is the beeping of the heart rate machine as it slowed and nurses yelling at each other. Everything went white and the next thing I saw was a dark room. At the time I thought I was dead, but in fact I was just waking up in my darkened room after I had passed out from the pain. Once stabilized, the nurses shot me up with a ton of pain killers and I had a deep snooze. It was the next day that they moved me to the Queens Heart Ward, where I would stay for another 7 days.
I won’t bore you with the details of my long hospital stay. There were some really bad days, like when the doctors accidentally caused an involuntary “colon cleanse”, or when I spent hours on end puking into a bucket- God, I hate chemotherapy. And there were some better moments, like when my family visited, or when my Mom found a volunteer Harpist to play for me in my room during lunch one day.
After 9 days of being stuck in that awful place, I finally begged hard enough and my doctor released me to my mother, as long as I promised to stay with her for the first night. They really did want me to stay for a few more days, but I feared if I did I might lose my mind. And I missed my apartment and my cats so badly. Although my Mom did visit them everyday and she let me FaceTime with them so I could see their adorable furry faces. I cried a lot after those calls.
After all that time in the hospital, my doctors (Cardiologists and GP’s) concluded that I had Reoccurring Pericarditis (Duh!) but that it was going down so I could be released on my own recognizance. I was going to have to take a medicine called Colchicine for six months to help prevent Pericarditis as well. I’d been on it before, and luckily there weren’t any side effects. I also had to take a ten day regimen of Aspirin. Yuck. That coupled with the chemotherapy, still very active in my body, brought on heavy waves of nausea and vomiting that didn’t seem to rest.
I spent the first two weeks out of the hospital sleeping constantly, and vomitting every other moment. I lost 28 pounds from two weeks before the chemo when my pain was so bad that I couldn’t cook or eat, to three weeks after the hospital when the sight of food still made me sick. While not the healthiest way to lose weight, it was the only victory out of an otherwise horrendous month.
It’s been just over a month since the fateful day when I had my first chemotherapy infusion, that Kickstarter this awfulness. To this day I still got nauseated every now and then, and vomit 2-3 times a week. From what I can tell, the first infusion did nothing for my pain, and I’m in the middle of an “active flare”. I never did get the second infusion, half because I was too sick during the time it was scheduled and other reason…well that’s to be continued…
My Pericarditis is under control for now though I’m still prone get it at any time of i change my medications rapidly or start something intense like chemotherapy. Apparently my body is very against trying new things that could be good for it. My Rheumatoid Disease is still trying to stake its claim, holding tight to that flag, trying to make me its own. Comments will be made as it progresses.
Blackness. Or maybe it was all a bright white. Maybe there was no color at all. Just silence. Maybe that quiet seemed like it would never end.
All I could concentrate on with pain. It seemed like pain was all around me, infiltrating every bone in my body, every piece of flesh. It was so dark and solemn, everything seemed so far away and out of my reach, and yet it was deafening in the darkness.
Where was this place that I had been brought to? Had I closed my eyes and found the place that I would breathe my last breath? Was this the gate that I was meant to cross? How did I even get here? How did any of us get here? Was I meant to be here at all?
Noise. Shouting, machines whirring, everything seemed so loud. It was too loud. The pain hurt. The noise hurt. I just wanted everything to stop. I was ready for it all to stop…
Vision blurred. I saw people running around me, they’re fuzzy outlines making no sense to me as my eyes opened and closed. The pain. The pain was deafening. I just wanted it to stop. I was ready for it to stop. I just wanted it to stop.
I close my eyes, and left them closed for a while. I opened them again, blurred lines still running about… I closed them. Open. Close. They moved with the time of the beeping machines around me, alerting people to my heart rate as it slowed, slowed, slowed…
Finally, the pain overwhelmed me all at once. My breath stopped, my arms went limp, my body had decided… My eyes closed and all I saw was white. It was everywhere. And I was everywhere. I just wanted everything to stop, and it did. But only for a moment.
Only for a moment.
For all my readers, I know it’s been some time since I’ve posted a blog. I just wanted to let everyone know that it’s not because I’ve abandoned my writing, but because my health has taken a serious decline. I just got out of a long hospital stay where I was admitted for heart complications related to my severe pain disease. I will be writing about the experience soon, once I’ve gathered my thoughts together and am able to express them with a little more clarity.
Thank you for your patience!
It blows my mind sometimes to remember that I’ve been disabled for over three years now, and out of work for two. It’s been a really rough lifestyle change for me, especially because I used to be so independent. If someone told me three years ago that I’d one day be living off food stamps and a stipend of $250 a month, well, I would have laughed in their face.
Before I got sick, I lived a really active life. I had a full social calendar: I spent time with friends, went to the beach nearly every weekend, walked the Makapu’u Lighthouse trail and climbed the 99 step staircase on Diamond Head, had family dinners occasionally, and travelled as much as my income would allow. And while I wasn’t rolling in Benjamin’s, I lived a comfortable life. I ate out at my fave restaurants often, had no problem buying those cute new shoes at Ross, and enjoyed going to the movies any day of the week, not just the $6 discount ones. So you can imagine how very hard it was to go from being happily financially independent, to relying on food stamps to fill my fridge (though to be honest, I never got enough monthly to really “fill” it). Or to have to feel helpless each month when I tried to pay $500 worth of bills with only $250 of financial aid. It was rough. And I knew the only way I could get through this new enforced lifestyle change was to apply for Social Security benefits. So I applied. And waited. And waited…
After two years of filing paperwork with my lawyer, gathering unending medical records, and not to mention dealing with multiple doctors and ER visits, and countless days of being stuck in bed in pain, I was finally granted Social Security benefits on May 11, 2016.
However, it was a bit anticlimactic, in the sense that my new Medicare benefits wouldn’t start until the end of November, pushing back my surgery for the much needed pain pump. The entire reason I was able to be seen by a judge so soon was due to a letter my doctor wrote, outlining that it was medically necessary that I get a pain pump surgically implanted. And not only was it necessary, but it needed to be done asap. I believe that letter was how I was granted a hearing after having only waited two years. I’d heard of residents waiting up to four years for theirs, so I knew I should count my doctor as one of my many blessings. And while I’m very happy and grateful that I was granted Medicare, as my state funded insurance wouldn’t pay for the pump, I was stressed that they told me it couldn’t start til the end of November. That’s 5 months away! What part of “medically necessary” and “needed ASAP” had gotten lost in translation? And on top of this great and also not so great news, I’d found out what my monthly cash allowance would be…
Now, usually when I’m told about a money allowance I’m going to be given, I always round down. I never count my chickens, and while optimistic, I usually tend to expect the worse. That way I’m almost always pleasantly surprised.
When my lawyer and I originally went over my case, and she explained to me how things worked, an amount was mentioned. I was really happy with said amount and foolishly based all my future plans around it. However, when my Social Security benefits were finally granted and I was told how much financial aid I’d be receiving, I was in for a rude awakening. The amount my lawyer had originally mentioned was no longer on the table. The financial aid I was to receive was barely more than I’d been getting from the state for the last two years. I felt sick to my stomach as I realized that there was no way I would be able to live off of it without finding some sort of supplemental income.
Reality set in that despite the fact that I was deemed “disabled and unable to work” by the federal government, I would have to do something to make some extra income, or I’d be facing homelessness again. I had wanted to close my donation fund once I’d been granted Social Security, but decided to leave it active for the friends and family that still wanted to help support me financially when they could.
But that would still not be enough to keep my head above water. I ended up doing some research and learned that I could work part time, as long as I didn’t make too much money monthly, and that a supplemental income wouldn’t affect my benefits. It seemed the only realistic option for me to do. But what job could I possibly get with my current ailment? I was deemed “unable to work” for a reason. There was no way I could return to an office job. I mean I’d just spent two years arguing that I was unable to work because of my disease, and now I’d have to work anyway just to be able to make rent?
I knew no matter how hard things got, I absolutely positively needed to keep my apartment. It was my home base! A place where I felt safe and comfortable. Not to mention that I also medically needed it due to the nature of getting my pain pump in December. Patients receiving the pump needed to live in a stable environment (not couch surfing) , and have their own quiet and comfortable space. My doctor had told me he’d denied people in the past to receive the pump due to unfit living conditions. I’d worked too long and hard to get these benefits only to be denied the one thing I needed so desperately. 5 months away or no.
For the past couple years my older sister Emma had been selling a high end skin care line through direct sales. While it had started as a part-time gig that she did for a little extra cash on top of her full-time day job, her leadership skills and drive to do well took it to a new level. She ended up buying herself out of her full-time gym franchise, so that she could turn her part-time gig into a career. Because the product was only available through word of mouth, social media, and direct sales, it was easy to make a lot of money, and quickly. My sister went from a struggling gym owner, with having barely any time to spend with her sons and family, to a successful stay at home mom, with money in the bank, and a smile on her face.
When she heard that I needed a part-time job that could allow me to work from home, on my own schedule and time frame, and where I could be my own boss, she knew that her new career path was the route for me to take as well. I did some research, and it looked like this kind of work was acceptable for the Social Security administration, and it seemed like really the only kind of job that I could handle. It would be direct sales that I could do from home, and even from the comfort of my own bed if I wasn’t feeling well. I could make my own hours, and be my own boss. And the most important thing of all: it would put a little bit of much needed income in my pocket to supplement my small financial aid benefit.
Now, don’t get me wrong, the irony is not lost on me that I’ve been working hard with my lawyer to get Social Security benefits because I can’t work a regular job. But I feel like the federal government really forces us to have to do that, because we aren’t receiving enough financial aid to live off of. How am I supposed to pay rent, utilities, phone bill, medical bills, and life expenses with well under $1000 a month? It’s impossible. Especially in Hawaii.
And so here I am…
I’m supposed to be so excited that I’ve been awarded Social Security, and I am. But it’s anticlimactic. Because despite being awarded this necessary life assistance, it’s just not enough to sustain.
And here I am….with Social Security financial benefits, to start towards the end of summer.
And here I am….with Medicare medical benefits, to start at the end of November.
And here I am….faced with starting a new job after having been unable to work for two years because of my extremely debilitating, and painful disease….
It’s day two since I started my “new job”, and I’ve been in too much pain to even get through the welcome packet, and watch the training video. I can’t even fathom what other people are forced to do to supplement their own incomes. Not everyone has a supportive sister that just happens to have an in on a direct sales job that you can do in your pyjamas. What must they have to put their bodies through in order to stay afloat?
Is this what you wanted Social Security? Is this what you had in mind for me when you decided on that ridiculously low financial aid amount? For me to fight for benefits, only to have to still work with them to survive?
Oh the irony.
For those who would like to make a donation to my active life fund you can visit my webpage: http://www.gofundme.com/sixthousandsteps
And for anyone interested in information on purchasing products from Rodan + Fields skin care line, #1 in the U.S. for anti-aging, as well as blemish & acne care, please feel free to email me: firstname.lastname@example.org
Yesterday started like almost every other day. I woke up around 6:30am, cringing before I even opened my eyes. The pain wasn’t too bad, but it was definitely there. Probably coming in at a 5/10, if I had to gauge it.
I stretched. Wiggling my fingers and toes, twisting my torso from right to left, attempting to pinpoint exactly where the pain was at its strongest, and where it’s weakest point was as well. Knees, it was definitely in my knees. Feet, yep, they were swollen too. Fingers, however, weren’t as bad as usual. All in all, there was a chance I might be able to have an okay day.
In fact, by the time I’d had a shower, got dressed, had my coffee, and even put a bit of makeup on, I was feeling pretty good. Or at least good by my standards.
I had plans to meet my mom in town if my body was feeling up to it, and since my limbs seemed on board with the idea of leaving the confines of my bed, I left the house eagerly by late morning.
It was when I was standing on the curb at the crosswalk, waiting for the light to change, that I realized this act felt very similar to when I used to head to work. Bag under my arm, ear buds in my ears playing my latest favorite Pandora playlist, pep in my step… I mean to any passerby I probably looked like a regular woman.
When was the last time I’d felt like this? When was the last time I felt any semblance of normalcy in my life?
I traversed two blocks to the bus stop, where I boarded an express bus headed into downtown. I flashed my pass to the bus driver who gave me a familiar look before waving me past. I knew the look all too well, as I’d seen it more often than not since acquiring my disability bus pass a year and a half before. It was the “I wonder how she got that pass?” look. A look that was often also seen on the faces of other bus riders when I took a seat in the “elderly and disabled” section. Though that look was usually accompanied with a scornful frown, or an exasperated sigh, and a rolling of the eye that was supposed to convey their outrage that a young woman like myself would dare sit in their section.
Yesterday, however, I was feeling peppy enough to walk past the disapproving eyes of the elderly, and secured myself a primo seat in the back of the bus. And there I stayed for 21 minutes until I reached my destination. And once there, I hopped out of my seat, a little painfully I might add, and traded the cold air of the bus for the sticky, humid air of Downtown Honolulu.
Instantly feeling hot and uncomfortable, I walked across the street and into my favorite discount store, eager to browse the racks and abuse their free air conditioning. It was only midday by this point, but I couldn’t help feeling a bit fatigued. Sure, I’d been awake since the early morning, but I hadn’t done much in that time, had I? Just slowly gotten ready for the day, had a coffee, and caught a bus…so why was I so tired?
I called my mom to get an eta on her whereabouts, and after figuring out that I had about thirty minutes to spare, I headed to my favorite local coffee shop for a much needed latte. It was only a four block walk from the discount store I’d been in, but gosh did it feel longer? And the sun, the hot, stifling summer sun…there was no relief from its piercing rays. Why weren’t there any benches or places to sit downtown? Not one shaded park bench or concrete slabs to lean against so one might catch their breath or hide from the blinding light. When did the town get stingy on places to sit?
By the time I’d reached Brue, my favorite coffee bar, I felt weak in the knees, and not in a romantic swoon kind of way. My feet throbbed, my mouth was as dry as desert, and I was “sweating bullets” as my friend liked to coin it. I felt hot, dizzy, and exhausted. Was it always this hot? Was I just out of exercise, or did those city blocks seem much larger than before?
However, I was much happier once inside the doors of my beloved caffeine haven. Recognizing me, the barista started my order before I’d even reached the counter, and after delighting in the fact that I’d finally filled up my stamp card, meaning that my next cup was free, I settled down to enjoy my favorite latte.
By the time I met up with my mom I was feeling much better, caffeine always has that affect on me, and looked forward to spending some quality mother/daughter time. Preferably from the comfort of her air conditioned Mercedes. Unfortunately, she needed to make a quick 30-min stop at the local tire shop to get her back tires replaced, first. Assuring me it would be quick, she had an appointment afterall, we headed to the (thankfully) cool waiting room of the establishment, to wait.
I took my midday medications with a sip of water from the community cooler. Thank goodness the water was cold as ice.
Customers walked in. Customers walked out. My knees started to ache, swelling up from the heat, and stiffening from sitting on a hard chair for too long.
I dozed once, twice, three times.
My fingers started to swell, and my feet felt tight against the restraints of my slipper straps. Gosh it was hot, why was it so hot.. I left the no longer cool waiting room and took a lap around the parking lot, trying to figure out what was taking so long with our car. A glance at my iPhone clock and I cringed, realizing we’d already been there for an hour. So much for it taking no time at all with a scheduled appointment…
By the time they relinquishedour car back to us it had been two and a half hours! My entire body by this point was begging to be put out of its misery. I’d only been sitting in a slightly air conditioned room and yet everything ached like I’d just run a marathon. At what point had my flare started? I didn’t even know. All I knew was how I felt now- hot, sweaty, sticky, and exhausted, with a dull yet painful ache widespread throughout my limbs. Because of our unfortunate change of plans for the day, mom and I grabbed a quick bite (as we’d missed lunchtime while sitting in tire shop hell), and then I headed home for what I knew was going to be a hard nap.
Crawling up onto my bed was brutal. My limbs weren’t impressed with every way I tried to get comfortable. They were too tight, too achey, and the exhaustion didn’t help as I’d have liked. It took too long for me to find a comfortable position in which to arrange my tired and sore body parts. Finally, after what seemed like hours, fatigue ruled that my body was going to sleep and that was final!
Late last night I thought back through the day, and I pondered at how different my life was now compared to when I used to work. When I was employed I used to rise around 7am and reluctantly head into the office. I’d usually work an 8-9 hour day, with only one or two quick breaks where I’d run out for some coffee or a snack. I didn’t need naps, nor did I feel the weather temperatures as much. I’d come home, and while on the rare occasion I’d take a nap, it would only be for a thirty minute stretch. I always had so much to do after work, like make dinner, or see a movie with friends.
Then I thought back onto the day I’d just lived. Sure, it may have started at a similar time, but the activities and feelings were vastly different. I was no longer a “Working Professional”. I didn’t have a 9-5, and a lunch break, and frequent trips to the water cooler.
I was, and am, a full-time patient.
My life is ruled by medication schedules now. I get tired from riding the bus, and walking a few city blocks. I fall asleep in waiting rooms, and get hot flashes in already hot summer weather. It’s been like this for two years!
And yet, somehow, I’m surprised by it every single day. My reality is that I’m a full time patient. And now my job is to learn to accept that.
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I broke a plate this morning.
It wasn’t on purpose.
Sometimes I really take for granted what I have in this world. And I’m not talking about materialistic things like a closet full of nice clothes, food in the fridge, and a roof over my head. Though those are very important things to have, don’t get me wrong.. I am extremely grateful for the roof, and the apartment it’s attached to. I am happy to have clothes to keep me warm/cool, even though the majority of them are secondhand (clothes are clothes). And I know I’m lucky that I get food stamps monthly that provide the food that fills my fridge and cupboards.
I am grateful for everything I have.
But what I’m talking about is taking things for granted that we don’t usually think of. In college, I took American Sign Language, and for one day our professor asked us to put ear plugs in so we might understand what it would be like to be deaf. I lasted about three hours before enough was enough, and I took them out, continuing on with my regular day. I couldn’t handle what I felt was a burden. The worst part, of course, being that I totally missed the life lesson my professor was trying to teach about how good we had it, when others aren’t always as lucky.
Yesterday, I really got what my professor was trying to convey a decade ago (you can stop counting, I have no issues admitting I’m 34!). That morning I woke up with a really painful flare in my right hand. Yeah, that’s right, in my entire body-head to toe-I only had pain in my hand. Not a big deal right? WRONG. Not only was the pain in my hand excruciating, but I’d also lost all motor function there. And I got to learn this the slow and hard way.
I woke up, and started my morning routine… Walked into the kitchen to turn my electric kettle on so I could get to caffeinating. I usually put my two cup French press out the night before, along with my coffee cup, milk frother, and Pyrex measuring cup (to heat milk in), to set myself up for the following morning just in case I wake up having a bad day.
My sisters friend Faith, got me super addicted to drinking cafe au lait last Christmas, which is basically hot coffee with steamed frothy milk on top. Of course I don’t have the super expensive Nespresso machine that she does, so I can’t make espresso style drinks at the drop of the hat. I can, however, do the next best thing by making my coffee in an individual French press, and then warming up the milk in the microwave and using a cheap milk frother I found at Bed, Bath, & Beyond for $22 to make the frothy milk that goes on top of the hot coffee. It may not be a fancy drink like you get in a cafe, but the fact that I can make a cafe au lait in my own home in about 10 minutes (as long as my hands are cooperating) is pretty miraculous. And delicious!
Well, I didn’t think I was having a bad day til I went to pick up my electric kettle, full of just-boiled water, and nearly dropped the thing. Pain shot up my right wrist and forearm. It wasnonlynthen that I realized my right thumb knuckle was discolored purple, and the flesh around the joint was shiny and stretched. My hand looked much larger than normal, every joint puffed up from the inflammation. Definitely not what I was expecting.
But I figured it was just a regular pain flare, I get them all the time, and I should be able to just deal with it. They truth of the matter was that I thought I could handle what I figured would be a frustrating, albeit painful, nuisance. Boy was I wrong. You may not realize it now, but you use your hands for EVERYTHING.
All day I was dropping things that ended up being too heavy for my pained hand to deal with (insert broken plate here). I had to switch hands to do the simplest of tasks: opening cabinets and the fridge door, using a pen/pencil to attempt to write anything (what a joke!), making the bed-can’t pull the sheet if I can’t even grip it! Everything was so difficult and painful. Not to mention how nearly impossible it was to shower with only one hand! Especially when it’s the wrong one! I had to use my teeth to bite my shower gel bottle to get the stuff onto my wash cloth. Shampooing my hair was painful at best. And then when it came to wrapping my hair in a towel? I might as well have made a video and sent it in to America’s Got Talent for all the embarrassing maneuvering that took place in my tiny bathroom.
I was suitably humbled.
A few years ago (well maybe more than a few), a movie named Constantine was in theatres. It was an instant hit for me since Keanu Reeves, my future husband, was in it, and the genre was sci-fi/fantasy, which I LOVE. I think it may even have been one of the first movies Shia LaBoeuf was in as an adult, pre-Transformers days for sure. I know, I know, get to the point Christine! Anyways at the end of the movie, Constantine slits his wrists in attempts to get the devil to appear so he can talk to him. And once the devil does in fact appear, (excellent entrance by Peter Stormare by the way!) he attempts to light a cigarette, but finds that he can’t. Loss of motor function, due to his cutting of the nerves and tendons in his wrist, made it impossible for him to use his lighter. I’m not sure why that particular scene seemed to be on a repetitive loop in my mind yesterday, but the fact of the matter is, that it was. And all day I was cursing(often out loud) on my inability to use my hand. Something so easy, so small, how could I not use it?? Agh the frustration!
Getting dressed? A nightmare! Do you know how difficult it is to put a bra on when you can’t even hold one end up for the other to clip onto? I’ll answer that one for you- VERY. And it wasn’t just the fact that I couldn’t hold or grip things. The pain was so harsh that I couldn’t bear the weight of anything. The smallest of objects, a book, or the tv remote, we’re just too heavy!
I very, very, slowly attempted to make breakfast. With two hands, poured the hot water into my French press to get the coffee brewing. It took two attempts for me to open the refrigerator door, after finding I couldn’t pull it open with my right hand (GRR!), so I could grab the milk for my cafe au lait. While my milk was microwaving, I went to the cupboard to grab a plate for my toast, and voila!! Smashed to pieces on the floor was one of my small plates. I had already forgotten that I couldn’t lift practically anything, and the plate proved to be too heavy. I grabbed it out of the cupboard and hadn’t taken two steps back towards my kitchen counter where my toaster was happily toasting my English muffin, and it literally just dropped from my fingers onto the floor, where it broke into millions (yes I’m exaggerating) of pieces.
Agh how frustrating!! All day I came across normal things that I couldn’t do. And when I say all day, I really do mean ALL DAY. The pain never let up, the flare never abated. It was continual and never ending it seemed.
In the late afternoon I went to meet my oldest sister at a local coffee shop near my house. Getting dressed for that little trip took ages. In fact, I ended up ditching my denim shorts with it’s annoying buttons and zipper for the easier skorts option where I could just pull them on and off. Though to be honest, it was still hard even then, as I still couldn’t grip anything with my right hand, so I sort of had to shimmy into them. Anyways… I met my oldest sister for coffee and once again struggled with a plate when I had to carry my latte in its saucer to a table. My day of struggles seemed never ending!
And after coffee with my oldest sister, I had dinner with my youngest and her fiancé. The hilarity of my unusable hand continued. I couldn’t use chopsticks with our takeout dinner, I couldn’t hold the glass of iced water I had requested to drink with my meal, and later when attempting to light a candle, I encountered the same problem as Constantine had faced when trying to use a lighter. IMPOSSIBLE!
By the time I got home at 9pm last night I was ready to call it a day-or hell even call it a month. I couldn’t believe how hard life was without the use of your right hand. And the thoughts that swam around in my head all day as I dealt with this at first nuisance, but eventually burden, came to light when I realized that some people deal with his permanently. Think about all those soldiers out there fighting for our country every day, putting their lives (including body parts) at risk. Coming home with missing limbs, hands, not to mention serious mental stress and anguish. And here I am bummed out that my hand hurts from an arthritis flare.
Life can be a real handful, especially when working with only one hand! But I guess I just have to push through and make the best of what I’ve got. Sure, it can be painful, really, really painful! But I have to remember that it’s just one day. One day I struggle with. I think I can handle one day of stress and nuisamces, when others don’t get that option.
I didn’t sign up for Rheumatoid Disease. I didn’t choose it. I didn’t ask for the pain and the hardships and the struggle. But at the end of each day, when I think about what my life is like now, I remember that I’m grateful for what I still have.
Air in my lungs to keep me moving, two feet that take me places I need to go, two hands that feed me and help clothe me, and a voice to remind myself and others that it’s not the struggle that keeps us going til the end, it’s the memory of the journey and how we tell it that gets us there. I am grateful for all that I have, and I will continue to share that for as long as I can.
Thank you to all of my friends and family and readers and supporters for all that you have done and given me so far. I appreciate you. If you or anyone you know would like to help further, you may visit my web page at http://www.gofundme.com/sixthousandsteps
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?”
“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
- Body aches
- Joint swelling/pain
- Low blood pressure
And harsher symptoms can include but are not limited to:
- Adrenal failure
- Suicidal thoughts
- Severe dehydration
- 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:
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
For my fellow comrades who have lived through the trials and tribulations of trying to make the world see us as we truly are, sick and in need of help, you understand more than anyone how hard this life is.
We didn’t choose it. Chronic pain is not something we asked for. Invisible illness isn’t something we wanted. Autoimmune diseases are not a life choice. And yet everyday we are treated like this is our fault. Like we brought these horrendous ailments on ourselves because of our diets, our amount or lack of exercise, our unwillingness to just “get over it”. We are judged, shamed, treated with prejudices, mocked, and generally frowned upon because of one simple fact: we are sick.
There is not one day that goes by where I am not asked why I’m not doing more to help myself. I cannot explain the depth of my exhaustion and exasperation at the ineptitude and rudeness of these individuals. I do not know how much longer I can continue to be polite and forgiving towards those who push their unsolicited “advice” on me. I have been sick for over three years now with this incurable disease, and in this time have met less than three people who share it with me. These three people are the only people, besides my doctors and others with similar chronic ailments, that are permitted to give me advice on how I should take care of my body.
As I’ve stated countless times before, having experienced a migraine is not the same as experiencing daily chronic pain. Neither is being tired after a long day at work, the same as being too exhausted by your disease to get out of bed. That being said, No, I don’t feel lucky that I get to take a lot of naps. I am happy that your cousin’s best friend cured their cancer with herbal tea, but I’m sorry, that’s really not the same thing as what I’m going through. I also understand how much You hate BigPharma, and how they are ruining the world with their drugs and high price points, but you have to understand that I can’t just stop taking my medications. I could die. Seriously.
Is that fact something you can at least wrap your mind around? Or is my life less important than your beliefs?
Speaking of beliefs..
When I first filed for Social Security I had to live off the belief that there was someone out there that would see me for who I am, and what has happened to me, and help me. Little did I know how hard that concept would be for people. How cold hard facts placed right in front of someone’s face could still be pushed aside, ignored.
Initially, not only was my disease not taken seriously by the Social Security Department, but also by friends and family who could see my ailments first hand. How could anyone dispute what their own eyes could see? My swollen fingers weren’t supposed to be the shade of eggplants. A healthy woman in her early thirties shouldn’t cringe when she stands up from a chair. And even if the physical sight wasn’t enough, shouldn’t the fact that trained professionals were prescribing me STRONG medications be a clue??
Two years of chronic pain, heavy medications, failed treatments, and sweat and tears… And in those two years I was denied by the Social Security Administration three times for “insufficient evidence of disability”. Ridiculous. Three pointless denials before I broke down and hired a lawyer to save my own sanity. And still another year followed slowly before I was even given a chance to plead my case to a live person, and not a stack of papers.
And tell me why my illness, my disease, is looked at by one person, and that person decides if I’m sick or not? The system scares me, to be honest. Three years of agony, and my financial and medical future is decided on by one person whom I’ve never met before. Someone who hasn’t seen my daily struggle, can’t see me when I’m in the ER every month, isn’t with me as I take my thrice daily handful of pills, and wasn’t by my side in March when I lay on the bathroom floor unable to move.
The idea that something so important is based on a decision of one person is scary. But all I needed was one person to believe me. Just one. One person would seal my fate, no matter what.
On May 11th, 2016 a letter was written to me. It’s contents were the decisions of one man, and one man only. My hands shook as I opened the envelope, and I can honestly say that I’ve never felt such paralyzing fear in my entire life. Three years of waiting. Three years of wondering why people could not see what was happening to me. Wasn’t it as painfully obvious to the world as it was to me?
Letter in hand, I read the text. And then I read it again. And then again. Tears spilled over my lower lids, and I hastily brushed them away, only at that moment realizing my very public placement inside my favorite coffee shop.
Notice of Decision: Fully Favorable
Three years. Three years for one person to finally look at me and decide I needed help. No, not decide. Know.
And following this statement of decision was a declaration of why this one person came to the conclusion they did. It’s a very long declaration, so I won’t be quoting the whole thing. But there are a few lines that really spoke to me, and led me to greatly respect the person who wrote them…
“I give great weight to these findings as supported with the overall medical record and findings of the claimant’s Rheumatologist, and agree completely with the testimonials given by (said) doctors.”
Finally. After three years of appeals, and chasing down doctors notes, labs, and medical records, there is one person in the Social Security Administration that sees how sick I am. And not only sees, but understands what I’ve been through. The relief of that acknowledgement was immeasurable. And to make it even better, (not that it was necessary to, but gosh was it wonderful anyways) a personal testimony of how my case was wrongly denied.
“….the State agency consultants did not adequately consider the claimant’s impairments, and rendered their opinions prior to completion of the medical record…”
Upon completion of the letter I initially thought I’d be angry at the fact I’d been wrongly denied for three years prior to my approval. But I found instead that I was only elated that I had finally found peace. Peace through the fact that the one person that I needed on my side, came through for me. I cannot quite put into words what it feels like to finally be believed. To say it’s a relief would be a gross understatement, but for now, it will have to do.
Three years for someone to believe I was truly sick and truly needed the help. They made their choice based on extensive medical record and the testimony of my doctors and myself. That’s what they needed to determine their ruling. What is it, do you think, that my friends and family need to make theirs?
To be clear, I am extremely grateful that after three years a judge has finally ruled in my favor regarding Social Security benefits and Medicare. I will however not be receiving said benefits for quite some time as told to me by the administration. I am lucky to have gotten them, yes, and now get to play the new waiting game of When do my benefits start? I’ve been told I can look forward to them in the next six months. Phew, long time! And because of this extensive waiting period, my donation page is still open for financial help and support. I thank everyone who has been a part of my journey for Social Security Disability help!
For financial support: http://www.gofundme.com/sixthousandsteps
I often find myself thinking a lot about time. Not time in the sense of watches and clocks, but more as how it relates to me, and how it passes. For someone with an illness or a disease, time can mean a lot of different things. Time can mark minutes til your next medication feeding, days until another doctors appointment, weeks between ER visits, or years left on your life clock. I’ve been thinking about how precious my time is. And how limited it can truly be.
I marvel at how my time is perceived by different people around me. A family member made a comment to me the other day about how well they thought I’d been doing in the last six months. I found it to be such a strange observation, as I felt the last six months had been fairly brutal on my body and mind. Since January I had been in the ER five times, broken three ribs, had one particular episode where I was very close to almost dying, and had sustained a lot of mental stress surrounding my filing for Social Security Disability Benefits. How did that appear as doing well?
I guess it all depends on everyone’s perception of time. For the person who thought I was doing A-OK, well, I guess that was to be expected since they only saw me on my good days. No one wants to visit or support during the bad days, so most of my family and friends only see me on manageable, low-pain days. And if there were more of those days in their memory, then I guess a lot of time had been spent with me on good days. At least they were showing their support, however, by wanting to see me. They may have had a different perception of how I was actually doing, but at least they made time to see me often enough to draw that conclusion.
For my mom, who is my primary caretaker, my time has been marked as not so well. She sees the good, the bad, and the ugly. Now, in saying this I’m not inferring that my last six months has been a torturous journey. I have certainly had my good days, maybe even good weeks. But for us, the time marked is seen through a different pair of lenses. While this part in her life was definitely not chosen, my mom has done extraordinarily well in her role. I may not have even made it through to this time and place if it were not for her. My mom always has time for me. She understands more than anyone what I’m going through and does everything in her power to help and support me.
A friend of mine was recently saddened by a situation involving some of her close friends. It was made known to her, and apparently not in a nice manner, that her presence was unwanted at a social gathering. Understandably, she was devestated by this. But upon comments from concerned friends, she lamented that while their behaviors were unsatisfactory, the people in question were still her close friends. I understood exactly where she was coming from regarding letting bad behavior slip by when it concerns people your known a long time. While having not dealt with the exact same scenario, I have on many occasions let people walk all over me, or treat me unfairly, only because of our history and the time spent knowing them.
The whole ordeal gave me a lot to think about, and actually plagued me with thoughts on it for a few days. My time, more so now than ever before, is precious. Because of this, I want to surround myself with people who want to spend time with me. Not because they have to, or because they feel obligated, and especially not if they feel guilty. But real time spent because of love, friendship, and support.
My lens, much like an hourglass, views my time like grains of sand, slipping through my fingers at the beach. I see it in front of me, clear as day, and yet there is nothing I can do to stall or slow it. And one day, the sand will all be gone, along with my pain.
I have an old friend who works extremely long hours, with little to no breaks, and often for weeks at a time without a day off. She is very dedicated to her work, so her full schedule while hard, is not a deterrent. Because of this, and the fact that she travels a lot for work, we rarely see each other, often going months between visits. However, she always commits to making time to see me and catch up whenever she can, sometimes sacrificing her only day off in weeks to drive to my side of the island to take me to lunch. And when I object, which I often do as I’m concerned she doesn’t rest enough, she always tells me that
“You make time for the important people in your life, Christine. Actions speak louder than words.”
I cannot agree more with that statement.
I’ve always been a big ‘people person’. I have a lot of friends, a lot of acquaintances, and I’m constantly meeting new people. And while my disease has changed my life a lot, and I’m unable to make as much time as before to accommodate seeing all my friends, I make a pretty good effort. I’m pretty good at keeping to my social engagements, and even if I’m ill and have to cancel due to a pain flare or last minute doctor’s appointment, I almost always reschedule for the next day or the closest next time available.
I have someone else in my life, whom unfortunately does not make time for me, despite their insistence of how important I am to them. They make plans with me often, and yet there is always a last minute cancellation, with apologies all around, though sometimes there’s no explanation at all. As much as the world is in a rush, there is always time to make a quick call, apologies can take a few sentences at the most. Hell, they can even be texted. Anyone who says they don’t have the time is lying.This person often makes it very clear that I am to drop everything to accomodate them when their schedules clear, however if I ever have a request or an invite, they have no time for me. Frustrating… I can’t stand flakiness..
Actions speak louder than words.
Here’s where marking time becomes important. Whether you’re like me and have a debilitating disease, or you’re a regular Joe Schmo, your time is important. Your life is important. So the people you give your time to are also important. Why do we give our time to so many people who make it clear that it’s not as important as them and theirs? Why are we wasting our efforts on people who don’t return our love and support?
Is it because they’ve been around a long time? Does length of friendship or family history make it ok for others to walk all over us, or hurt our feelings? The answer is no. Family and friendship mean nothing if love and respect don’t go hand in hand.
Time is important no matter where you are in your life journey. We respect time, and in turn we should respect the time of others as well as ourselves. I realize that while my time may be limited, and my life span will unfortunately be cut shorter than others of my generation, my time is still important. So I need to surround myself only with those who want to play an active role in my life. If you truly believe you are an important person in my life, well… Prove it.
Thanks to all those who continue to read my blog and have supported me throughout my journey with Rheumatoid Disease. If you like to help support me on a final basis please visit my page at http://www.gofundme.com/sixthousandsteps