Sweet Dreams My Darling.

Staring into darkness, waiting for the light

With disease like mine sometimes it seems impossible to catch up. No matter what I do, how long I work, how hard I try, everything just slips my mind and slips my grasp. I just forget things, or if I remember I am too fatigued to attempt them. In the past couple weeks I have spaced three assignments. Plum forgot they existed. Another time I fell asleep working on an assignment so I gave up and went to bed. Early.

The funny thing is I'm not deprived of sleep. I get a solid 8 1/2 hours every night, and wake up at regular time, which usually helps. But for some reason the past couple weeks I just can't get my mind straight. It's all running away from me and no amount of notes, to-do lists, or rest is helping me close the gap. So often people like me are simply exhausted, and it's so hard to explain why.

This morning I missed my chemistry class. Not because I overslept, not because of pain, and not because I decided I didn't want to go. I woke up the same time as normal after my 8 1/2 hours, and couldn't do it. Getting out of bed was the mountain I couldn't climb today. So I rolled over and slept for another 2, and still didn't want to get out of bed.

It's hard to explain to people that my body sometimes doesn't want to work, and that it's not me being lazy. My body is constantly in fight mode, thinking it is sick 24/7, and that really wears me out. When most people get sick they have a recovery phase--a few days where their body gets back to full working order--but my body never gets the opportunity since it never really recovers.

I am no superhero. I am not wonder woman. I am just trying to get by. It is hard. It isn’t fun.

I can choose to fight against my disease, to go against it. To swim upstream. But that will get me nowhere. I can’t pretend the disease isn’t there and go on with my life like normal, because that will make it harder. Instead I have to let the disease do its thing, and every once in a while remind it that this is still MY body.

So sweet dreams my darling, you'll make it through tomorrow.

Chaos

My life is chaos. Extremely organized, disciplined chaos. Everything about my life is planned out yet I have no control over what happens. It is all scheduled--every hour of every day. I recently came to a startling realization, and am trying to come to terms with it. With disease, so much of my being is changed by it, and it's hard to separate myself from my RA. I am not my disease, I just have to live with it. But how am I supposed to remember who I was before my disease? How am I supposed to remind other people that there is more to me than a diagnosis? How do I do these things when every aspect of my life is controlled by my disease?

It's easy to say that the pain associated with RA is controlling, but when I really look at it I can see the extent to which it does. Even tiny seemingly insignificant aspects of my daily life are dictated by something I have little ability to change. When I get dressed in the morning, the pain level in my hands will determine what I wear. When the day comes to a close, my disease forces me to sleep or else fatigue will consume my body. Inflammation makes me think long and hard about every piece of food I put into my body knowing that I may regret it later. The nodules in my feet will determine the shoes I can put on (and we know heels are out of the question). My energy levels will decide how much activity I can do in a day, or during a week. Side affects from medicines mean that I can't enjoy the sunshine the way I used to without quickly burning as I did today. But it is so hard to follow the needs of my body when I see everyone else around me living with the luxury of ignoring the needs I am facing every moment.

Don't get me wrong, I am lucky. I am fortunate that I can still do what I am doing. I can go to school, I can take care of myself, for the most part I am physically able. But all my little victories like eating healthier, or having a regular sleeping schedule are much less sweet when I know I don't have a choice. I don't choose to go to bed at 9:30pm most nights, I need to. I don't choose to wear my tennis shoes to class, I have to. I don't choose to avoid chocolate, my body requires it. Admittedly I don't always do what my body wants me to, but if I want things to go more smoothly it is necessary.

How am I supposed to find myself in this? Where does the disease end and I begin? I feel like I am not holding the reigns of my life, like I am stuck in a whirlwind of chaos. I am completely scheduled--every blood draw, infusion, refill and medicine. I have reminders to set up needed appointments, contacts between insurance and care providers, and alarms to take this pill or that. I have everything taken care of, and nothing to show for it.

No amount of planning can prepare me for life autoimmune, as I am at the mercy of my disease; completely and utterly powerless.

Time and time again

I’ve explained my disease exactly 47,146 times but there always seems to be at least one person who has yet to hear the story. Now, since I am at college, there are a several thousand more people who don’t know what I live with. Yet. They most assuredly will ask why I am wearing two wrist braces, or why I walk a little funny, or why I won’t flop onto a couch already full of people. Answers: they hurt, it hurts, it will hurt. That is my golden explanation.

I have definitely gotten more lazy with how I explain my disease, simply noting it as an autoimmune joint disease that causes swelling and pain all over my body. I no longer talk about how my body recognizes synovial fluid in the joints as dangerous and proceeds to attack them, or how I have to take a myriad of medicines and vitamins just to be able to get out of bed. I decided that people don’t care to hear about every little detail of my disease, and if they do then they will ask. One would think that it has become second nature to explain it, and to be honest it has. I could describe in detail the nature of my disease without even giving it a second thought—but that doesn’t mean I want to.  I get tired and bored of repeating myself over and over to a new face only to do it again fifteen minutes later.

My disease is a huge part of my life, and that is not something I have the power to change, but I don’t want it to be the thing that people remember about me. I don’t want to be known as “the girl with the disease” or “the girl in pain.” I can’t hide or hide from my disease, but there is so much more to me than a faulty immune system. People sit around here in leisure, munching on their sandwiches and drinking their coffee while they type away on their laptops about theoretical physics, or political ambition. I carefully bite into a carrot so as not to aggravate my jaw while typing about the toils of my life. I am different from the majority of people in this room, and I have no intention of letting all of them know exactly how. Right now, they see me as another student working on homework and eating my lunch, and that is exactly how I want it to remain. They see me—not a medical nightmare. In a way, meeting brand new people is relieving because they will only know what I tell them about me. And that is why I have cut my explanation of disease short. It’s just a thing I developed a couple years ago, not a catastrophic event. Since they have never heard of it, they won’t know any better anyway. Here I can be exactly who I say I am. A student. A Husky fan. A science fanatic. A cheese lover. A brown-haired, brown-eyed, 5’5” female. Here, I am not a disease embodied. I am exactly what I want to be.

Inspiration

This is the phrase that gets me through the hard days. I decided to have it tattooed on my shoulder as a permanent reminder of my strength and struggle with disease. Some people told me it was silly and irrational, but my best friend said it best: "I think its good for you. You are going to spend a lifetime living with RA and you should have permanent motivation for  the rest of your life." This is also a paraphrased Bible verse about how God will not push you past your ability to overcome. Just thought I should share the words that keep me going!

Keeping the faith

I come from a religious family, there's no getting around that. I was born Christian, raised Christian, and am a Christian. From the time I was big enough to understand directions I found myself running around as a sheep, wise (wo)man or shepherd in the Christmas pageant. When I reached the later years of elementary school I would get up in front of the congregation and read the scripture, or sing a special song for offering time. Being part of the church was part of my childhood, and became a part of who I grew up to be. My family is firmly planted in faith, and I have never known any different. Sundays meant church and family dinners, mealtime meant prayers, Easter meant the sunrise service, the first sunday of the month meant Holy Communion--that's just the way it was. 

I grew up in a faith based environment wrapped in prayer. Our father is the great provider, the bringer of light, the almighty creator I credit for our very existence. He has more power than power can know, more might than the crashing waves of the ocean, and the dedicated, encompassing, unconditional love of a parent. I was raised taught that God can do anything. He sent a son who can cause the blind to see, calm the raging seas, and multiply two fish and five loafs of bread. If that's what he can do in the flesh, then his power in heaven must be so much more. God makes the impossible, possible.

So why me?

Why is it me who was given this? Me, the one who followed her entire life, the one who grew up in the third pew on the left-hand side, the one baptized as a baby and confirmed as a teen, the one who prayed and gave thanks over every meal, the one who knew nothing more than to trust that God will take care of us. Why was it me? As far as christianity goes, I played it by the book. I did everything right. I followed when he said follow, no matter how scared I was (Argentina mission trip--that's another story). I listened when he told me to share my story. I loved when they did not deserve it. I believed when no one else did. I did everything right, so why me? Why was I the one he chose to let this happen to? Any Christian will tell you that if he chose to, he could heal me in an instant. Better yet, it wouldn't have even happened in the first place. 

For a long time, this is how I felt. Angry, just angry. I resented the years of my life I spent devoted to a God who would punish his child who did nothing wrong. I resented telling others about my God-filled life, hoping that they would find his light. I wanted to scream at everyone to run away before they too were betrayed by the one being who could cause and cease their suffering. How was I supposed to feel? My days were filled with physical pain, how was I supposed to praise and glorify the one who could stop it--yet didn't? It was heartbreaking to have my entire outlook on life be shattered when my compassionate, nurturing, and merciful God allowed me to experience what I continue to experience. Wrapped in anger and fear I was. Fearful that my God was punishing me even though I begged for forgiveness for whatever I had done. Afraid that my God has forsaken me, forgotten me, left me. Angry, scared, confused, hurt, broken...

It would be a blatant lie to say that my faith has not been challenged by my disease, I think that is fairly obvious. For a long time I lost my faith, until I realized that without it I would be even worse off. My God knows me, and knows what I go through. And therefore, he is the only one who can heal me. I don't mean cleanse my body of disease (although if you can read this God, that is acceptable too!), I mean find a way to treat it. Healing may mean finding the perfect cocktail of medicines, or a lifestyle that promotes wellness in the body. God is the only one who can help me find that. Healing may mean finding solace as I come to terms with the reality of my new existence, mentally accepting every obstacle as a challenge that I personally must and will overcome. 

Without this disease, I would miss out on a lot of things. With this disease I was given the opportunity to volunteer and advocate with the Arthritis Foundation and inspire thousands to overcome their own struggles. I have learned to appreciate the people around me, the ones who "babysat" when I had surgery, open jars for me, and offer their assistance. My disease has showed me that I am more fortunate than I realized, and for that I thank and rejoice for my creator.

I am now a firm believer that God is carrying me, leaving only one set of footprints on the beach. I will praise him through the pain, and thank him for the blessings he has bestowed upon me. My family, my church, my friends, my doctors, the roof over my head, the food on the table. God will not test me past my ability to overcome, and is using me as a tool to spread a message of hope, healing and faith. I may live my life in pain but I am living a  damn good life, and something as silly as a disease has no chance at trying to change that.

And for those of you reading this, those who struggle with disease or anything else, just know that you were given this life because you are strong enough to live it.

Thank You, Disease

It started in the left side of my jaw. Strange pain that restricted how far my jaw could open. A few months later, sore feet. Both of them felt like I had been walking on them for days, even when I got up in the morning. Oftentimes I was forced to limp around. Then came the fingers. Slowly at first—just one, then two—until nearly every finger was painful and enflamed on a daily basis. For a while, the progression stopped. For about a year I developed no additional symptoms. Maybe it was a brief remission, or maybe my concoction of medicines played a role. But then it was the right side of my jaw. Same as the left: sore and restricting. A few months later, the wrists. My left wrist is by far the worst. It seems that any sudden movement or slight turn sends pain shooting up my forearm. Shortly afterward, my right elbow, then my right shoulder. Followed immediately by my right knee and left shoulder. Don’t forget, these are cumulative. One symptom does not replace another it just adds to it. The pain I am experiencing is causing more than just problems in my joints too. Compensation for the pain has caused a misalignment in my neck of more than two inches. The inverse curve of my neck puts stress on my spinal column, thus causing pain through the muscles in my neck, back and shoulders. It’s a muscular soreness and stiffness that has lasted for months and months with no signs of stopping.

So this is what my life boils down to? Widespread agony? I am always asking myself where it will end. I had that break for a year where it discontinued its spread. This of course was followed by an extremely aggressive 7 months that made victim half a dozen new major joints, and multiple muscle groups in addition to those my disease already took captive. When will it end? When every imaginable joint is a torture? It’s disheartening to dwell on these kinds of questions, but at the same time I can’t afford to ignore them. My disease will forever shape who I will become in the future, as well as the person that I am now. My disease can be a burden, or I can choose to let it bless me in a way I never knew something so negative could. I have no other option but to sit down, buckle up, and get ready for the ride of my life. Like it or not, this is the new normal.

Drugged Up

Medication is a near requirement for people with my disease. 10,000 people every year die from it--it simply can't be ignored. It can attack so unexpectedly, violently, and completely that there has to be a line-up of medicines for at least the hope of keeping it under control. Lifestyle habits can only do so much to treat the pain that races through the body. Finding the perfect cocktail however seems impossible for someone like me. It has been over two years since my diagnosis, and we have yet to come up with something that eliminates more than 30% of my pain. Three different pills, three different injections, and various other direct pain treatments have still left me with few results. I don’t like having to take the synthetic anti-inflammatory I take now, but if I want to be ale to get out of bed I don’t really have a choice.

The starting line up: DMARDs. Disease Modifying Anti-Rheumatic Drugs. Also used to treat cancer. My first DMARD was methotrexate. It’s just a tiny yellow pill that I took weekly, gradually increasing the dose up to eight a week. Every four weeks like clockwork I was in the lab getting blood drawn (I call this “visiting the vampires”) for tests. One panel to check my inflammation levels, another to monitor my kidney and liver function. Inflammation was less than desirable, but my organs were responding with very little concern. After a couple months with seemingly no improvement, the Doc switched me to the injection. Sub-q it’s called, and I injected my stomach every week. The hope was that placing the cell-killing drug straight into the bloodstream would allow my body to absorb and used it better. Well it did, but not against my disease. While there was little to no improvement with my disease, the injections did manage to attack something else. My hair. Every time I would shower a clump of hair would end up in the drain. And forget brushing it—that was a nightmare! It became thin and damaged, and so much was falling out that it ended up having a length that spread over 6 inches. In the middle in the back it was scary thin and really short. I had been growing my hair out for a few years, so my once thick, healthy, long curls turned into a choppy, wiry mess. It was absolutely heartbreaking, and I knew I had to get of the medicine. Fortunately my Doc agreed, and since it wasn’t really helping a whole lot anyways it was time to break out the big guns. Biologics.

Biologics target and treat the disease directly by interfering with the immune system response. If the immune system can’t react properly, it can’t attack my body. Immunosuppressant’s—all in the form of injection of IV—are a common treatment for my disease, but can have adverse affects (such as infections). Humira, was my twice-monthly injection into the stomach or leg. One things to note: it hurts in two ways. The needle isn’t as small as the previous one I used, so it hurt piercing the skin. I’m okay with needles fortunately, so I could get past that. However, the fluid also stung going in to the body. If it wasn’t room temperature it hurt even worse (Humira is a refrigerated drug). After about four months, we added another medicine.

Normally a biologic is used in conjunction with a DMARD because typically they work better together. The obvious choice would normally be methotrexate, but since I don’t want to be bald before the age I am even allowed to drink we had to use a different one. Again, I started Sulfasalazine on a low dose—just one a day—gradually to be increased with organ monitoring.

At the time of my second surgery, it was pretty clear that Humira wasn’t doing enough. I was seeing about 30% improvement, but the Doc was hoping to see at least 80% and upwards of 100% to knock my disease into remission. I stopped Humira two weeks before surgery (to allow the immunosuppressant to circulate out of my system) as a safety precaution, and was given an “in the meantime” drug. Prednisone is a synthetic but powerful anti-inflammatory. It works extremely well as managing my inflammation, but long term it can be really bad. For me, it causes insomnia, water retention and an insatiable appetite leading to weight gain. But when I didn’t have the Humira in me it was a lifesaver.

After surgery, it was time for another biologic—Orencia. I have been on it for almost two months, and again am not seeing a whole lot of improvement. I still am taking the prednisone because I couldn’t do anything without it. I have gained 10 pounds on it. I have maintained my weight at a healthy 130 for years, and in a few months I managed to break 140. I have also moved up to six sulfasalazine a day, which is not the most pleasant experience in the world. It gives me a terrible headache, adding more pain to an already pain stricken body. The Doc wants to give the Orencia another month, but if that doesn’t work I’m not sure what we will do next. Most likely another biologic—there are at least five we have yet to try. The only ones left however are IVs, which are very inconvenient while I am at school. I am hoping that the Orencia will kick in to at least 60% in the next month so I can stay on this track.

Meanwhile, my left wrist and right elbow are really concerning to my Doc. They are severely enflamed even with the prednisone, so she put me on a prednisone burst. For a few days I was on a dose six times higher than normal, tapering back down to normal over the course of two weeks. If that doesn’t knock out the inflammation in the two major joints, I may have to get them injected with cortisone. I had this done to a knuckle once—it sucked. Painful at the time of injection, but for the following couple of weeks my knuckle felt amazing. The problem is that it’s not a permanent treatment, and can only be done a couple times.

I am a walking medical mess, and struggling to find a course of treatment that works for me. The DMARDs ruin my hair and give me headaches, biologics have yet to work, and the one drug that does provide me with relief is not an option for the long-term treatment my disease requires. I am a cocktail of medicines with three pills, three injections, one joint injection (with possibly two more), and four surgeries under my belt. What else is left?