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.

Nodules

My foot a few days after surgery

I am extremely lucky to be in the chosen few. The select few that get special perks. I’m in the 1% of the population that has RA. Within that one percent, I’m in the 20% for whom methotrexate doesn’t work, and in the 5% that have their hair ruined by the medication. I’m in the 15% who develop rheumatoid nodules, and in the 1% who get them in their feet. I should buy a lottery ticket. With everything disease related there are certain rules, certain statistical facts of the disease and how it acts. And it seems I am always the exception. I am the one who is in all the smaller percentages of “less common” cases, which basically means I’ve got a lot more trying to hold me back. Well, to all the life-wrecking, joy-sucking healing-preventing improvement-slowing problems: good luck.

“Oh my gosh what is that!” That’s usually how people respond the first time they see it. They act like I have some bizarre-looking abnormal growth on my elbow that is grossing them out. OH WAIT, that’s because I do. But it’s not some weird wart—it’s called a rheumatoid nodule. They grow under the skin, not on top of it, and can’t be spread or removed the same way as warts. A rheumatoid nodule is a lump of hard tissue that usually grows on a prominent joint of the body (like fingers or elbows). They are benign and typically do not cause any problems. They can be as a small as a lentil, or as large as an orange. The ones I have range between pea and blueberry size. On my elbow they are smaller like a pea, but I have two or three of them clustered on my left elbow. That’s why my left elbow gets such strange reactions when someone first sees it. Yes, they are relatively small, but they still look weird since they stick out so much being on the point of my elbow. For some reason my right elbow doesn’t have them, so it’s just the left that is peculiar. Elbow nodules are the more common of the rheumatoid nodules, but they are purely cosmetic. I could get them removed if I wanted to, but right now a funny looking elbow is the least of my worries.

I was more worried about the ones that grew on my feet. When your body is already experiencing widespread pain, you do as much as you can to eliminate any additional cause of physical pain. Nodules on the feet, suck. Not only did my feet hurt at the joints where my toes connect to the rest of the foot, but also on each foot I had two nodules in the ball. So every time I took a step it was like I had two pebbles stuck in my shoe—but I could never take them out. No amount of removal, cleaning, or shaking would get the darned rocks to leave, because they were inside of my foot. After a month or so of developing the lumps, I went in to a podiatrist. I could tell they were growing, and didn’t want them to become a bigger nuisance than they already were. Eventually, we decided to surgically remove the two from my left foot.

February 1^st, 2012 they operated on my left foot. It was only an hour-long procedure, but there was a month long recovery period. One incision was on the outside, but the other was down the pad beneath my big toe. Of course, this placement meant that I was unable to walk. At all. Even a little bit of pressure could make the bottom incision open up, thus thwarting the healing and potentially leaving nasty, hard scar tissue in replacement of the nodule. Essentially the scar tissue could defeat the purpose of the surgery itself. And so, it was bed rest for a week, followed by three weeks of crutches. Doesn’t sound too bad right? Wrong. It you have arthritis issues, crutches are the opposite of friendly. The pain in my wrists prevented me from being able to support myself on crutches for more than a few meters, so my only independent way of moving was blocked. Don’t forget that it’s February—I still have high school to attend. And so, for a couple weeks I got to have a wheelchair at school. It wouldn’t have been so bad, but people didn’t really get why I couldn’t use crutches. All I had was an inconspicuous little black surgical shoe, so people probably just thought I was lazy. It wasn’t exactly fun to have a wheelchair at school, but my amazing friends are really why it was bearable instead of humiliating. Since they are all familiar with my disease, they were completely understanding and supportive of the whole thing. They fought over getting to push me, opened all the doors, made me paths where needed, and defended me if someone tried to come down on me. I am thankful that they were all there for me post-surgery.

The second time was much easier. It was June, so I didn’t have school to attend. Plus, both incisions were on the sides of my right foot so recovery time was much faster. It was still challenging to figure out showering with one foot, still annoying that I was unable to play in the water or soak my foot while all my friends were having fun, and still frustrating that I was completely dependent on other people (since I couldn’t walk). It was good though, getting things taken care of before they get worse. All too often I feel like I’m trying to catch up to my disease by tackling the symptoms. But with the nodules, I was able to get all four of them removed from my feet before they could really cause any problems. I feel proactive with my pain, and that gives me just a little bit of confidence in handling my disease. Now about that elbow…

Fragile: handle with care

As much as I don’t like to admit it I am weak. I don’t mean mentally or emotionally I mean physically. My body is frightfully weak. Of all things, I am discovering that this is the one that is hardest for people to understand. My mom used to joke around saying, “well you’re young and able you do it!” But now that couldn’t be farther from the truth. My body is in full attack mode 24/7 and no longer has time to make sure muscles are sturdy, ligaments are well attached and tissues are protected. My body is focused on attacking my joints—offense only. Now, because of the disease the rest of my body is at a high risk. I have lost all the tone and strength that once carried my body effortlessly, and allowed me to youthfully spring back. When this disease struck I lost juvenile vitality and continue to lose it. Usually it’s “people of a certain age” who feel the way I do right now. I’m not that lucky. I get to experience the achiness of body every day for presumably the rest of my life. Oftentimes I feel more like my mom’s mother than her daughter in a body characterized as feeble. I am weak. I am frail. I am delicate. I am fragile. Please handle me with care.

It does not take much to send pain streaking through parts of my body. It takes almost no contact to register a massive blow, triggering the pain. When someone bumps into you in the hallway, you feel an instant of vague discomfort, say, “oops excuse me,” and then carry on your merry way. For me, this little bump could be the difference between a good day and a bad day. A little bump against a particular part of my body—namely the shoulders—will cause an ache that may last for hours instead of seconds. My body, though slow to move around, is lightning fast at recognizing pain.

The worst by far is still the wrists—the left one. Since my left hand is dominant it already is extremely overstressed. Writing, holding a phone to my ear, television remotes, using silverware, all of these are done with my left hand. My left hand is the one that I naturally throw up for a high five or fist bump. When I reach out to pick something up, or am getting ready for the day it is with the left hand I most often am using. I can’t just stop using it or I would get nothing done. But every time I do one of those things I am straining my left wrist. One time, when I went to tickle the stomach of my boyfriend he threw up his arm to block mine. A perfectly innocent and logically expected move on his part, he simply knocked my arm away from his body. Of course, he wasn’t expecting it to hurt me the way it did. It felt like a bomb had gone off in the middle of my wrist, like someone had smashed it with a sledge hammer and shattered the already little bones. In the few moments after contact I was sure my wrist had broken. I was in writhing agony as I cradled my arm against my body, wishing for the pain to egress. No, it was not broken. It was just the disease intensifying what should have been no more than a second of distress. I should be thankful that nothing broke, but I’m not. I would rather have it broken knowing it would heal, than to be left in painful limbo as I am now.

Foot massage anyone? Unless you have an inexplicable fear of letting people touch your feet, you would be crazy to pass the offer up. Unless, of course, you have a disease like mine. Too much pinpointed pressure quickly goes from a pleasurable experience to an unbearable one. This I think to be really unfair. I mean, really? Can I not even enjoy a simple indulgence like a foot massage? My feet can be so tender at times that even gentle pressure is extremely apparent (and not in the good way). My feet—the part of my body used constantly—should not be this vulnerable.

Would you like to know a physical fear I have? Falling down. I did this once while walking with my boyfriend on a trail through the woods. Slipped and fell. I flung down my hands to catch myself, and obviously this didn’t exactly have a positive affect on my wrists. Fortunately however, it was only my wrists affected. I am genuinely afraid of really falling down, like full body to the floor. At that point any joint would be completely defenseless. Wrists, shoulders, knees, or elbows: there’s no telling what kind of damage I could do by being a klutz. Every step counts, because every step I take soundly is keeping me from potentially weeks of hellish being.

It’s not easy to explain to people how easy it is to amplify my pain. A nudge here, a bump there—it doesn’t take much. My disease has made me susceptible to otherwise harmless contact, and people hurt me without the intent or the realization. I can’t expect all people to tiptoe around me everywhere I go. Besides, people forget almost immediately how fragile my body is. I’ve recently started a new method of explaining my frailty to people. I tell them to think of their grandmother (or if she is really young their great-grandmother). Think of what you would and wouldn’t do around or to her. For example, you probably wouldn’t jokingly pick her up and throw her onto the couch, or spin her around when you hug her goodbye. Then I tell them to think of me and treat me the same way they would their grandmother. In physical ability, I am not too far off. You don’t have to treat me special because of my disease in any other way—just remember how fragile I am and please, please be careful.

Ignorance Is Bliss

I can see it in their faces. It’s the same look every time on every person. They read like books with the same three expressions: surprise, sympathy, and confusion. Surprise because I have an autoimmune disease that they have neither heard of nor knew that I had. Sympathy because they learn that I have a disease that causes mass pain. And confusion because they can’t tell that I have a disease just by looking at me. Their eyes all have the same confused statement behind them: but you don’t look sick.

They’re right of course—I really don’t look sick. I suppose this is a good thing. If I looked like I was sick I would just get a lot of pitying stares, which I very strongly dislike. I feel like a small, wet puppy that is tied to a pole left out in the cold rain when people look at me like that it’s awful. Again, my wrist braces are the only outward sign of something. Not a disease, just something. People always ask me how I managed to injure both wrists at the same time, and I dread having to explain the real reason for the braces. It would be easier if they were sprained, but they’re not. And when I explain I always get the same reaction and see the same three expressions without fail, because I don’t look sick.

Most of the world is naïve to a disease like mine. They understand the big-name issues such as heart disease, all types of cancer, Alzheimer’s, and diabetes, but not so much autoimmune ones like mine. Oftentimes they just don’t know it exists, and since it is not nearly as common or publicized as others they would have now way of knowing about it. I myself never knew what it was until I was diagnosed with it, and forced to learn about it. To a certain extent, I can’t blame people for not knowing about my disease—and I usually don’t. But when I don’t receive a certain amount of respect for my limitations I have a problem. There is a massive difference between being naïve, and being ignorant. When you don’t know I have problems, I certainly don’t expect anything form you other than common courtesy. But when you are downright rude (regardless of whether or not I have a disease) that’s not okay. Or when you know of my disease, and provide me no allowance or even common courtesy it is really not okay. I have dealt with this on more than one occasion. Ignorance. Plain ignorance. People who think I am exaggerating or faking it just so I can get attention or gain sympathy are extremely infuriating. How can people be so rude? I don’t understand how they can know a genuine problem exists, yet play it off like it is nothing and even have the audacity to accuse me of stretching the truth for selfish purposes. Especially when it’s people I know on a personal level—it stings.

It’s always hard to get people to understand how limiting a disease like mine can be. I’m 18 years old, and people expect me to be able to conquer the world. I have pain radiating my hands, and wrists and I’m still expected to hold open the door for everyone else. I have had four-foot surgeries in the past six months and still experience a lot of pain when pressure from standing is applied to them, but I’m still expected to give up my seat for an adult. When all the children are sitting on the floor, I am supposed to sit with them. Except for the part where it is really painful on my right knee, and it is almost impossible to pick myself up off the floor without help. I think people know that yes, I have pain problems, but either fail to realize or choose to ignore that fact that it prevents me from being able to do a lot of physical activities—even trivial ones. People don’t understand the kind of pain I live with, and don’t know the kind of affect it has on me. I think a lot of it is because they don’t want to know about what is happening to my body. And sometimes they don’t want to be bothered by it. If they acknowledge that I have certain, special needs they usually feel duty-bound to make it happen. It may mean a little extra patience on their part, or a little extra effort. I guess it depends on how generous or selfish the person is. I know this can make me sound a little selfish by expecting people to come to my aid, but I have come to accept the fact that I need help and am open to asking for it. This doesn’t mean I like having to ask for help, it just means that when I know I will need it I make sure it is there. But it’s always aggravating to come across people who don’t seem to care.

Ignorance is a wonderful thing for those who have it. They have no problems, no cares, and no worries because they chose to stick their heads in the sand. Turn a blind eye. Fake naivety. Ignorance—and not just to disease—will be the downfall of humanity. How can anyone expect to improve our society when they are so busy ignoring some of the problems? I wish everyone could be on the same page, especially when it comes to disease like mine. Not just so they will act more kindly toward me, but also so that they will be a kinder person in general. Autoimmune disease is a nasty thing, and if everyone understood the gravity of our situations life would be much easier. We already deal with constant doctors appointments, medications, and never ending symptoms. We aren’t asking much from society. A little bit here, and little help there. We don’t want your ignorance. We don’t need your ignorance. We need your respect.

Dependence

I was 16 years old.

What do 16-year olds do? We drive. We hang out with our friends. We go to concerts. We wreak havoc on our parent’s minds. We sleep late because we are up late. We get in trouble. We have fun. We live to be free. Independent.

I was 16 years old.

What did I do? I drove to the doctor. My friends visited me after surgery. I listen to Pandora on bed rest. I cause concern in my parents. I sleep late because I was up late. I was up late because my medicine causes insomnia. I have flares. I get fatigued. I hope to be without pain. I hope to be a little independent.

Birthdays roll by…17…18…19...and here I am. This is a list of things I often have to ask someone to help me do, that I used to be able to do all by myself:

•       Pick up anything heavier than a large bowl of cereal.
•       Open a lid or cap of any kind.
•       Pour myself a glass of milk, or water, or tea from a pitcher.
•       Anything involving the use of nimble fingers.
•       Zip up a dress.
•       Use a clasp on a necklace.
•       Braid my hair in the back.
•       Grip anything larger than a shoebox.
•       Reach something above my height (I can’t go on my tip toes).
•       Open the childproof cap on my medications.

In two months, I will be moving into the housing at the University of Washington (an apartment). This means I will be completely in charge of any chores, cooking, cleaning, shopping, and schoolwork that needs to be done. Yes, I am wonderfully excited to grow up and get to be a “big girl.” Yet at the same time I am fretting about living without my mom. She keeps me on track with my disease; always making sure I am taking my meds, filling prescriptions, getting injections delivered on time, scheduling appointments, making sure I have blood work done, and making sure I make it to the appointments. It’s glorious (and relieving) to know that she is there to take care of me, even though I usually manage all those tasks on my own. I guess I am just reassured knowing that she has my back in case I completely space something—she is my mom after all.

I didn’t realize how dependent I was on the people around me until we really started to discuss my moving away from home. Before college and my disease came up, I never thought twice about living away from home. Now, with my disease in full swing I admit that the thought of living even a few hours away from home is nerve-racking. So many things can go wrong. I have to find a new pharmacy, new doctors, and new resources in a place I am completely unfamiliar with. I am hoping that the University of Washington medical center will provide some assistance. At least I have a top-rated medical facility nearby.

I don’t like having to be dependent on others. In fact a rather hate it—most people do. While I was on bed rest (twice) after surgery, every little thing had to be done for me. Anything I needed or wanted had to be brought to me because I couldn’t get up and walk. It was nice the first couple days to having every need tended to, but then it just got annoying, and I felt like I was annoying everyone with my needs. Some day in the future I may be like that all the time. Completely dependent. If I can’t get this disease controlled I could very easily end up with a walker, a wheelchair, or worse. I don’t want to be the person who is completely broken at age 35. I don’t want to become dependent before I even have a chance to be independent. It is wonderful that I have so many people around me who are willing to help. I am lucky, fortunate, and extremely appreciative for all they have done and continue to do for me. However, at the same time I wish it didn’t have to be like this. I wish I could do it all by myself, but I know that won’t happen. Learning to accept someone’s help is unpredictably challenging. Having to relinquish control is not something that comes natural. I am having to teach myself that it is okay to request assistance, and isn’t something I should be embarrassed by. For people with a disease like mine, there should be no shame in needing the continuous support of people who love you.

More than meets the eye

Disease like mine is not fun. It is not pleasant. It is in no way merciful. At some times it is nearly invisible, at others it is impossible to ignore. There is a myriad of symptoms, targets, treatments, and side affects attached to this disease, thus making it more or less visible depending on the individual. For extremely advanced cases physical deformity (such as crooked fingers or wheelchair/walker use) is practically guaranteed.

This disease attacks primarily the joints, so the ultimate deterioration and disfigurement is (sadly) expected and readily understood. If you walk around stooped over, people are bound to be compliant and sympathetic. They understand, because they can see the issue. They are willing to trust in the fact that you may need them to hold open a door, or step aside to let you pass instead of brushing by without a second thought. They want to care. People believe what they can see, and when they see disability they will accommodate. While yes, it is wonderful that they are willing to help those struggling with such a physically tormenting disease, what happens to the rest of us? I am not restricted to a wheelchair or forced to use a walker, and I don’t have fingers that are permanently zigzagged. Don’t get me wrong I am truly grateful that my disease has not yet progressed to that point, but that doesn’t mean I am healthy. As I’ve said before my wrist braces are the only visual sign of my problems, and for all the unsuspecting observer knows I may have simply fallen and sprained my wrists. I don’t look sick, and therefore everyone assumes I am okay.

With me there is more than meets the eye. I want to come across as a beautiful person, but all too often my disease interferes. There are three main silent struggles—other than the pain—that I am always dealing with.    

1)  Fear

2)  Anticipation

3)  Frustration

I am willing to admit that I am scared. I am scared of my future, and scared for my future. I have so many plans, such grand aspirations and hopes for what my future will bring. At the same time I am so afraid. I want to go into scientific research, but what happens when my fingers become too deformed to perform experiments? What happens when my fingers are no longer nimble enough to keep careful notes or execute intricate investigations? I am afraid that I will be forced to follow a different career path before I can even begin down the one I have chosen now. What about my relationships? There are times when I just can’t go out—be it with friends or a significant other—and times when I will have to bail last minute.  I will always have to be asking for help. Sometimes I shouldn’t be driving, a lot of times I can’t do small tasks like carry groceries and open jars. How much patience will the people around me have? How long before they give up on wanting to be around me? What about parenthood? I am doing good to take care of myself—how am I supposed to take care of the four children that I want to have? I have always imagined having a big family, but I am afraid that my disease will keep me from having it. Everything could be gone; every hope dashed every dream crushed. I am scared that disease will change my future in a way that I am not okay with.

Anticipation is brutal. Yes, there tends to be patterns with disease, but extremely broad ones. One pattern for example is that every several months there is a new affected part of my body. That’s a pattern yes. But I don’t know where the target is, and I don’t know how badly it will be affected. What about what’s going on inside of me? My disease is systemic because it’s autoimmune. This means my entire body is susceptible—organs included. I am just waiting for a blood test to show inflammation of the lung or kidney or liver or something. Eventually it will happen, the question is when. It’s terrible to have to live right on the edge, never knowing what bad thing will happen next. Another thing I hate waiting for: a bout of fatigue. Unless you have experienced it yourself, you cannot possibly imagine what it’s like to live with extreme fatigue. On any given morning I may wake up and have absolutely NO energy. This is not as simple as being completely exhausted—sleep can cure that. Nothing can cure this kind of fatigue. No amount of caffeine or sleep or loud noises or bright light will wake me up when I am under this cursed spell. Sometimes when I go to bed I close my eyes and wish on imaginary shooting stars that I will wake up and just be in pain. Pain I can handle—I have learned how to function with it and live around it. But please don’t make me fatigued. And I am left to anticipate its imminent arrival.

And of course, the silent frustrations. The secret blame, the hidden shame, the annoyances, the anger, the constant irritation. I know that to an extent I cannot help the fact that I have this disease. There is no way I could have known this was going to be part of my life and no way I could have prevented it. That doesn’t mean I don’t wish I could have. Frustration and disease come hand-in-hand. When I can’t button my pants in the morning without extreme pain, what else can I do but curl up and cry? When I have to ask my mom to open a water bottle because I can’t, how am I not supposed to be embarrassed? When the most menial tasks become menacing obstacles it is ridiculously easy to get infuriated. I don’t just get frustrated with myself though; half of it is aimed outward. Angry at the world some call it. This world is not designed for people like me—people with physical challenges. Childproof cupboards = Maggie-proof. Childproof caps on my own medications = Maggie-proof. Stairs = hate. Having to sit on the floor = hate. It’s incredibly frustrating for me to live in a place designed for the mainstream population. People like me simply don’t fit in, and that’s a frustration that will never change.

Many people know of my disease. They have at least a vague idea of what it is, and what it does. They ask me those boring questions, and I give them those boring answers. But I have so much more going on underneath that they can’t and will never see. Secret struggles that make every day even harder, and every light shine a little dimmer. I may not look sick, but I am. And on those rare days where I genuinely do seem to be doing well, pain-wise I probably am. But that doesn’t mean I am not fighting a different battle. There are a dozen battles that I am in every single day, and winning the battle on pain does not mean I have won the war—there is always a battle to be fought. After all, this is not a war of definite victory. This is a war of attrition, so my armor is always on. A warrior they call me.