I will be participating in the 3rd annual RA Blog week this year, which funnily enough, begins after a Humira weekend and on the day of a rheumatology appointment. So I’ll be primed and ready to contribute on the #chroniclife of RA!
I will be participating in the 3rd annual RA Blog week this year, which funnily enough, begins after a Humira weekend and on the day of a rheumatology appointment. So I’ll be primed and ready to contribute on the #chroniclife of RA!
The gnawing chasm of infertility was awakened tonight, while online. It woke up, yawned wide, and threatens to consume me whole. In my resentment, I remembered this piece I wrote for a writing class. It’s about the day I got that final lab test result phone call where I found out that my ovaries decided to retire to Boca Raton already. The ticking in all of my writing refers to my mechanical Mitral valve. My heart is a clock ticking out all my remaining moments, not just a beat to walk to anymore.
Beginning – Spark
Tick, tick, ticking away, her heart ticked hard and loud behind her healed ribs. Shock flowed out from the center of her twisted gut and spread up and out to all distant corners of her body as she listened to the Doctor speak those words. Those awful words. Rose stood in the parking lot under a sunny sky wiped clean of clouds by the wind while the words revealed that it was too late, her levels too low. Darkened clouds rumbled from along the edge of her thoughts, threatening to drown her in an overcast mind. Grief struck ground first, followed by despair’s mighty roar. The fantasy that she had maintained for at least a year now, often ballooned by hope, just deflated in the blink of an eye. It had all come to this. Now. Not yesterday, not before the doctor appointments, the tests, the hopes, the dreams, the fears…
Those fears were real. Aged 36, Rose’s fertility was no longer ripe for the picking. She may have looked young still for her age, but her ovaries had aged considerably. The doctor was not certain as to why, as it could be any number of things related to her age, stress levels, medication, or her health conditions. But the why did not really matter. Not that much. The answer remained the same: it was too late. Levels were undetectable. The beginning of a little family, just one child to call their own, had stopped before it could even start. The spark that held so much promise in its flicker quickly vanished. Despite the sun shining brightly overhead, Rose was left in darkness, all encompassing.
My last post gave promise of potential fire to spill forth. Unfortunately, all of the air needed for my intention to burn was sucked right out by a hole punched into my ticking heart. My Grammy, as that is who she has always been to me, passed away on March 26th. She was 91. It was always somewhat expected, and yet we never thought Death would swoop by so quickly. The weekend prior, she began exhibiting certain symptoms and behaviors indicating that she was ready to go and join my late Pappy.
By the following Thursday/Friday, her symptoms worsened. She sunk into herself deeper, and comfort care with Hospice support would be put into place. I finally worked up the courage to visit with her that last Saturday, the 25th, for two glorious hours. We thought she would at least have a few more days. She had only that night. But it was her time to go and finally be with her Bob again, after five years of missing him by her side. My beloved Grammy and Pappy, rest in peace, together at last.
The writing below was created the weekend prior to her passing. It was a way to process my fear of losing her completely, even though a part of her had become lost for some time now.
Breath hooking upon the edge of wakefulness, Rose pulled herself up and out of the shimmering pool of slumber. Eyes cracked open against the soft lamp light, a surge of ticking in her chest as her body returned to the waking world to find that she had fallen asleep on the couch again. The TV screen showed images of a bogeyman chasing down screeching children, biting at them, until blood and gore revealed that the children were no more. Rose pulled herself up to sit properly on the couch and groaned. The last thing she needed to sleep through was a horror movie to gnaw at her dreams and wake up a bogeyman of her very own.
As Rose reached for the clicker, snatches of her dream world tugged at her. That’ll show her to ever fall asleep again with the horror TV channel left on to haunt her all night long. Dreams are designed to be confusing and revealing, but since she had started the antidepressant, her dream world had found a way to absorb her more fully into its skin. An eerie land of themes repeating night after night – going from one place to the other, with shadows of her past making the buildings appear far too solid to her touch. She traveled from room to room, seeking out the unknown purpose of this illusory life, hoping to uncover a brilliant treasure buried deep within herself, while always remaining oblivious to her delusion.
She leaned back into the velvet soft couch, pulling the fuzzy blanket up to cover her chilled legs and feet, smothering the nagging discomfort in her mind and aching bones. At 3 AM, the shadows of yesterday were still in a tug of war over surrendering tomorrow to become today. Black night still painted the windows, without any promise of the brilliant strokes of sunrise yet to be rise. The side of the world remained asleep, with the faith that a brand new day would greet them, whether they wanted it to or not.
Rose was not ready for tomorrow, let alone today. She wished the night could linger forever. If the sun did not rise, slumber could cover her like a blanket and protect her from a world that she was not certain that she wanted to live within. She was over it. Over having to get up, get dressed, and get going. Over pushing herself despite her exhausted mind and fatigued body, trying to live a life like any able bodied person, pretending to be free of disease. Her past depression had captured her once more, spinning her thoughts until she landed back where she had started all those years ago. She wished only to fade out from the universe, like a dying star that ultimately sucked itself out of existence. No light, no shadow. No air to breathe. No more thoughts to choke her. Only free to be, simply nothing. But the universe thought otherwise, waking her up each day whether she enjoyed it or not. And here she was, again, awake. Alive. Stuck.
The house was quiet save for the constant ticking of her heart. Both her husband and dog were already asleep in the master bedroom, oblivious. Tommy had learned to leave Rose alone and asleep on the couch, dead to the world, depositing her pill box on the table nearby for when she finally stirred back to life. It was easier that way; let sleeping dogs lie. She would wake up eventually, at 2, 3, or maybe 4 AM, taking the pills designed to keep her alive or convince her that it was all generally worthwhile. Though now after the news she received from her Mother last evening, she was not certain just how much more she could take.
You try to light a little flame of hope, but the light throws shadows upon the wall. They whisper and try to close in on you, obscuring the brightness of the flame inside that deserves to radiate.
It’s time to blaze.
Biologics. For some, the word instills fear; “Will this help me? Or will this kill me?”. For a select few, especially online, the word triggers a spat out reaction of “Bullshit!” or “Conspiracy!”. These reactions might lead you to desire nothing but to clench your eyes shut over treatment options and suffer in silence. But if you can crack at least one eye open a smidge, you just might see how biologic medication holds the potential to transform your world in ways you had sworn off as being impossible.
Biologic medication is a form of DMARD (Disease Modifying Anti-Rheumatic Drug). Biologics are genetically engineered to disable the disease process through specific interruption of the inflammatory response. Compare this to other traditional DMARDs, such as methotrexate, which suppress the immune system overall. Patients have several different biologic treatment options, which attack the disease process in different ways. For my disease process, the best option has been a TNF blocking biologic called Humira (Adalimumab). TNF stands for Tumor Necrosis Factor, a protein which triggers the inflammation response within the immune system. For Rheumatoid Arthritis, Humira potentially offers varying levels of relief (depending on the patient). Humira can potentially reduce disease activity and symptoms by interrupting that over-excited inflammation trigger. The general goal is to reign in the progression of the disease. For some patients, that means experiencing varying level of remission. But keep in mind that by no means are biologics, along with any other currently available treatment, considered an actual cure. With that being said, the potential for improvement in your quality of health can feel priceless.
Speaking of which, a common argument used to discourage one from biologics is the higher cost of the prescription. This class of medication is more expensive than the old-fashioned DMARDs, however the manufacturers already came up with a solution via prescription assistance programs. Humira offers a copay savings card through Abbvie, which reduces my Tier 4 copay to $5 per refill. So when someone spouts off on the internet about how the heartless prescription companies just want you to become dependent on their medication and bankrupt you in the process, just remember that there is likely a low-cost assistance program potentially available to you that shows otherwise. Some of these manufacturers will even provide the medication free of charge provided you meet certain eligibility criteria (such as: your insurance refuses to cover it, you have no income, etc.) Perhaps if these companies advertised the low copay availability in a fashion similar to Subway’s $5 foot-long marketing, the naysayers might finally back off, eh? For more options, check out: http://www.pparx.org and http://www.needymeds.org or simply google the phrases “prescription assistance program” or “patient assistance program” with your preferred biologic’s name. Also, if you have any issues or concerns regarding insurance coverage or approval of the medication, contact the manufacturer. They can help you get the treatment you need, especially if your insurance company says otherwise. Don’t be afraid to ask for help in obtaining this course of treatment. You’re worth it.
How do I know? I know it can be worth facing the fear and taking the risk because Humira has greatly improved my quality of life. Prior to Humira, I was prescribed Arava. I was working a long-term temp job at a local University department, stationed on an upstairs floor. In an attempt to defy my disease, I would use the stairs to go up and down. Also, I lacked the patience to wait on the old elevator full of students to go up or down one floor. As it was, the exercise would be good for me anyway. Then I noticed I had increasing pain and stiffness, especially in my hips and knees. It was again becoming difficult to walk. So I saw my 2nd Rheumatologist and discussed options. Humira. He felt it would be the best option since I’d done methotrexate and plaquenil and Arava, all of which were never enough. And it worked. Humira has been my only RA treatment since the switch, in 2006. Yes, there are side effects. But all of our treatments have side effects. So why not see if it helps? The possibility of improvement was absolutely worth it to me.
Let me take you back: imagine my horror at finding out this meant having to inject myself. For some, this is a whole new level of “biologics can be scary.” The manufacturer will mention the black box warnings about lymphoma and infection risk in the advertising, but conveniently forget to show you the needle you’ll be side-eyeing as you work up the courage to inject. At the time, I could handle being stabbed in the arm by others for blood-work. But myself? First tried it with the syringe into the abdomen, while in the doctor’s office. That didn’t work out so well since: 1. It’s a syringe and 2. I don’t have much in the way of “a firm section of fat to inject the medicine into” (from Humira’s syringe instructions). I was a very reactive patient.
Ultimately, I settled on the auto-pen injection option, as that allowed me to fool myself more easily regarding needle phobia. Take one cap off. Take the other cap off. Push a button. Actually, swallow first. Brace yourself and relax your leg. Take a breath, hold it, and GO. Count slowly up to 10 or down to 1 depending on how brave you feel. If it burns, do the countdown quickly while exhaling through your teeth. Done! Slap on a dot bandage and you’re good to go. At least, until you notice some fatigue or brain fog settle in. Keep in mind that the side effects are different for everyone. For me, after 10 years, I’m used to them. I know what to expect. I know when it gets to me and I start to feel overwhelmed, that I need to remind myself that it’s just the Humira and I’ll feel better in a few days. And above all, that temporary inconvenience is worth it. Do I wish I felt far more awesome in the days after injection? Sure, but I have to remember that this treatment is working to manage a disease that has taken advantage of my body’s normal functions.
For me, Humira means injecting on a Friday evening, every other week, while allowing me to recover over the weekend. This is especially helpful since I work a full time Monday-Friday job. Now am I fully good to go by Monday? Not entirely. I usually don’t feel more myself until Tuesday. But then Mondays, especially after spending two weekend days resting, are going to be disorienting and stressful; I’ve learned to anticipate it. Usually within a couple of hours after my injection on Friday evening, I turn into a pumpkin. Brain fog and major fatigue hit and I conk right out. I call it my “Humira-coma”, if you ever see a tweet about it. Waking up the next morning…oh, who am I kidding, it’s probably nearly afternoon, involves a lot of blinking at the clock, staggering to the coffee machine, and telling myself that it’s okay as I likely needed the rest. Most Humira Saturdays, I try not to have much planned, other than usual chores, maybe get out and run an errand so that I feel useful. Also, another effect I noticed with myself, though I’ve not really ever heard it mentioned by others, is the mood shift. I’m used to them, so I expect them. There usually comes a point in the weekend where I will feel down, my mood slightly depressed. If you consider that this a treatment designed to suppress your system in some way, especially since you might not feel well after treatment, it makes sense as to why one might feel down, or overwhelmed, or more anxious for a day or two. Has anyone ever felt all that great fighting illness? No. So it’s completely normal for your body, immune system, and mood to react in response to treatment. This how my body responds each time I inject Humira. I expect it. I know it. I remind myself to just wait a couple days and I’ll feel like my usual self again.
For some, those reactions might still be too much to take. And I understand where they are coming from. For me, though, it’s been very much worth it. I can walk without pain or stiffness in my hips and knees. I can ride a bike. I can garden. I can carry heavy things. I can type fast. I can even walk fast again. Which I do, simply because I can. I can run, though I probably look funny doing so. I can bend. I can sit on the floor and not be permanently stuck there. I can make my disease completely invisible to the outside world, fooling others, at least until someone asks me why I wear gloves. Heck, I can even fool myself some days. I still experience pain, but generally at a much lower level. It tends to increase when weather turns rainy or cold or humid. Diet has no noticeable effect on my disease activity. I tried gluten free. I still had the same weather-related disease activity. Most of my activity seems to be housed in my wrists/hands/fingers. They were the first joints to flare into existence at age 15. They remain stubborn stragglers refusing to give in to defeat to this very day. I’m not sure what their exact problem is with my treatment, but it isn’t going to stop me from putting them to work despite their protests.
I still have rheumatoid arthritis. That’s my life. It’s part of me, who I am, who I know I will be tomorrow. But thanks to Humira, it’s greatly reduced from being an all over constant attack via aching, stiffness, and inflammation. I usually have aching of some kind randomly, on a lower level – which I’ve learned to ignore over the years. There’s usually not any inflammation visible to me most days. No stiffness preventing me from moving. But thanks to Fall weather entering into Ohio this week, from 90 degree summer weather to rainy and in the 60s overnight and for the rest of the week, my hands have turned a bit cranky. As I type this, I am aching from my wrists into my hands, on up through the knuckles and out through the fingers. It’s a wave of aching, with extra emphasis at certain points from the knuckles or the wrists, or the finger joints. There’s some inflammation swelling on the knuckles of my right hand, which doesn’t scare me because that hand has always been my disease’s favorite problem child. I can still bend my fingers. I can make a fist. I can type away to my heart’s content. It was supposed to be worse than this. I’ve never forgotten how I was told shortly after diagnosis that by the time I’m at my current age range, I’d likely be in a wheelchair. But I’m not. After 10 years on this treatment, I can even walk faster than most able-bodied healthy people. For me, it’s a joy to behold.
What if a biologic treatment offered you the same possibilities? What if your pain could be reduced? What if you could return to work, to hobbies, to more in life? What if you could lift your child? Heck, what if you could open that jar? You might even feel better overall. The idea of biologics and the potential risks they carry certainly might make you feel wary. But you won’t know if you don’t try out the treatments for yourself. If serious side effects result, you contact your doctor, of course. If you don’t like how it makes you feel, at least you tried, now you know, and you contact your doctor. If it didn’t help enough, perhaps a different biologic might work better for your specific disease process? But you won’t know until you open the door into your doctor’s office and ask “what if this works for me?”. Clinical remission is possible. Improved quality of life is possible. You deserve to know what lower disease activity can feel like; the possibility of better days. Are you really only afraid of the risks? Or are you afraid that things might actually improve? Or is it that you don’t know whether you can handle any more disappointment if the treatment fails? There is only one way to find out and that is by giving yourself permission to be brave and utilize biologic treatment. Reclaim your potential for health and attack your disease at its core. Honestly, if anything should be scared right now, it should be Rheumatoid Arthritis. Turn the tables round and disable it, one biologic at a time.
With chronic disease, we’re stuck in a body with a mind of its own, often reminded of our lack of control more than we’d like at the most inconvenient of times. We wish so much to control some aspect of the disease. But what if we can try to beat it at its own game by becoming our own advocate? Of course, there are those days when all you want is to stuff your head under the covers and pretend none of it is happening – an all too common progression into depression. You just don’t want to care anymore because it’s hard enough, it hurts, and it’s exhausting. Finally comes a day where the desire to know more clicks on inside your head, refusing to shut off until you ask those questions and admit that you need more answers; “what if?”, “what else?”, and “why not?”
In the beginning years of my disease, it was enough just to get through each day with my symptoms and leave it to my doctor to figure out. We tried methotrexate and plaquenil. Eventually, not enough. I still took Naprosyn but was taken off after 5 years due to the bleeding risks. Cortico-steroid injections were given in my fingers, knees, and the bum injection that is supposed to alleviate symptoms for a month. Still not enough. Then came Arava and there went some of my hair; though it did provide relief from major disease activity. I mostly rolled with my RA care back then, as I was generally lost and overwhelmed from just dealing with the pain, finishing high school, and trying to be college-bound. Part of my attitude was due to being in the regimented military medical system until cobra coverage aged me out at 23. I was very fortunate in that my first Rheumatologist, at the base hospital, was thorough in assessing my symptoms. He would inspect my inflamed joints, especially my damaged hands, and would explain the ins and outs of what was going on, what this meant, and the available options. My 2nd Rheumatologist, a civilian doctor, was assigned to me while I laid in my ICU room trying not to die from a heart valve infection. Strangely enough, despite the massive infection, my disease was not flaring as badly, so they didn’t prescribe any treatment. My heart pretty much won priority among the team of doctors caring for me. Once recovered, treatment continued with Arava until my symptoms worsened in the winter of 2006. I started auto-injecting Humira biweekly that Spring, continuing to this day. Even while having beneficial treatment, the urge to ask questions does not fade away. If anything, it motivates me to keep my eyes wide open despite the gnawing fatigue, looking for the latest information and treatment “just in case” my DMARD stops working, “just in case” a new symptom arises, and “just in case” I can’t cope.
It wasn’t only Rheumatoid Arthritis that prompted me to become more aware in caring for my health. My anxiety issues and panic attacks, which worsened after my cardiac issues, forced my crippled hand to grab on and climb out of that willful ignorance. Due to the RA and my heart surgeries, I was a bit behind on achieving self-sufficiency in adulthood. I needed to obtain an education, a job, move out, succeed. But after nearly dying and undergoing two open heart surgeries on top of the RA, my capacity for coping with anything was shattered. I thought the sky would fall on me at any moment, over and over again. Even if my joints were aching due to cold or rainy weather, the agony of my anxieties and panic level were far more excruciating for me. But I couldn’t let myself become too afraid to step outside. I couldn’t let the anxiety strangle my will to live, especially after nearly dying. I didn’t want to lose all that I had gained from surviving the odds. I discovered that information could light up my world, leading to empowerment over my health.
With chronic disease, you want to understand what these symptoms mean, why it’s happening, how the disease operates, and what options are available to bring and maintain relief. So the desire to understand what’s happening, why these feelings are creating havoc, how they trigger, and how to focus and feel good despite being overwhelmed was all too familiar. It became necessary to always look into what options can help me be better, which specialists are available to help me improve my condition, what therapies and medications are helpful, and what might I do on my own effort to bridge the gap. Doctors can only do so much, especially when they’re looking from outside your experience. But we’re the ones sitting in their office, stuck in our fear and frozen by our disease. It all comes down to us as patients to speak up and ask “what if?” and “why not?”. We deserve to empower ourselves as patients, so that we can live despite our lingering disease.
I see a 15 year old girl confused about what her future holds in her newly crippled hands. She certainly doesn’t hold “perfect” health, nor herself straight and tall, free of pain. She feels defeated. She wants to go back to *Before*. Twenty-two years ago this Fall season, I sat on the floor of my gym class wondering why I felt stiff, finding it harder to bend, and hurting where I hadn’t before. I expected the pains of exercise in the beginning of the school term, but this was over halfway through the term. I should feel great! I had always been on active child; Climbing trees, riding bikes, playing basketball. Maybe I just over-exerted myself? Sure, maybe that’s why I’m tired and achy. Maybe that’s why it feels harder to bend my knees, hips, and arms. If only.
Over the course of my 10th grade school year, rheumatoid arthritis moved right on in and broke down my lease on health and life. The constant aching became a nagging reminder that this wasn’t a dream. Inflammation and stiffness became the bestest of friends with each other and promptly bullied my hips, knees, and hands with disease. I was supposed to be living at that glorious age in life where you start forming ideas about the future and all of its possibilities to behold…alas, Adulthood! The question changed from “What do I want to grow up to be?” to “How am I supposed to live like this?”
The structure of High School in and of itself is a special kind of hell for inflammatory chronic pain. You have a number of classes to attend, only so much time to get from locker to class (on the other side of the building, of course), multiple times a day at that. Arriving in class, “Ahh, at last…I can sit”. At least until the end of class… “Oh no, I’m stuck.” Over the course of the hour, your joints cool down and set into place, stiff as can be! Think you’re still going to be the first kid out of the room into the next class like before? Hah, pipe dream. You’ll be lucky to even get out from under this desk timely enough, then to slowly hobble down the hallways (thanks to unforgiving stiffness and the pain), to even arrive in time for class. But when you do, ahh, you can sit…only to find yourself cast in stone again, over and over.
Toward the end of the school year, it became obvious that this wasn’t a passing phase or part of normal growing pains. I couldn’t bend my fingers downward, usually tested by being asked to make a fist. Impossible. Rheumatoid nodules poked up from underneath the skin of my fingers, while my knuckles swelled red. My knees were stiff and swollen. My hips stiffened up and protested whether I rested or moved. My entire body ached::ached::ached. At night, I’d quietly sob my heart out because this is not what I thought 16 should be like. Even the joy of learning to drive finally was marred by the agony of pain in from my feet to my knees to my hips to my wrists down deep into my fingers. Time to switch teen drivers…and I’m stuck in the seat. For finally being in the driver’s seat, I had no control and felt humiliated.
With diagnosis around the corner, came a glimmer of hope for the possibility of control. On one crippled hand, you know what’s wrong, generally. You’ve identified the enemy. You can attempt to map out a plan to conquer and reclaim. But will it work? Or will it demand its own terms? In June of 1995, I was diagnosed with rheumatoid arthritis by a primary care doctor. First plan of attack against this disease was to prescribe Naprosyn to help bring some relief until I could see a specialist at our next military move that following July. A new disease, a new location to call home, a brand new school, and your first medical specialist.
Unfortunately, this invisible disease does not render you invisible on those first days of school. But it does show itself in the waiting room of your new specialist. You’re the youngest patient in the room. You notice that you move just like the older patients. “Are you here with your grandparents?” The Rheumatologist’s nurse calls your name and you stand up. Just as you can’t run and hide from your disease, you can’t hide from wide eyes staring, puzzled by your youth.
Only after seeing my Rheumatologist did I start to realize all that is at stake when living with a chronic inflammatory disease. It’s incurable. It’s different for everyone. Some things work. Some things come with serious side effects. Discussions about the impact of disease activity as I grow older ripped the blinders right off – my disease progression could develop to the point of requiring a wheelchair in my mid-thirties. I was 16. I grew up as a healthy, active child. Who I thought I was before and thought I’d still be suddenly slipped from my crooked fingers. A painful reality sunk deep into my joints with me feeling aged before my time. It seemed impossible to hope for a good future when everything hurt all of the time. Would there still be enough within me to even want to live despite the pain of this damning disease? Am I stubborn enough to hang on?
My name is Kristin. I have utilized gloves for 21 years. I have Rheumatoid Arthritis, Raynaud’s Syndrome, depression/anxiety/health-related PTSD/Panic disorder (continuous treatment), and a mechanical Mitral Valve. I have survived a series of mini-strokes, pulmonary edema, congestive heart failure after nearly dying from Mitral valve infection. I required two open heart surgeries to be put back together again.
I had a rocky start and I am still here.