The Private Struggle Of A Medication Transition

The last two and a half weeks have been hell for me.  They’ve been a blur, really. 

There have been some good moments, but they have been between periods of complete and utter exhaustion, fatigue in which sleep only adds to it. 

My knees have felt like they are made of glass, like they could shatter into a million pieces at any moment.  My sinuses have felt like they were going to jump out of my head.  I have had horrendous heartburn that has kept me up at night.  I’ve felt like I’m constantly coming down with something, like I am about to get sick.  But I know I’m not.  That’s just the immunosuppressant working its magic.

The worst part, though, aside from the fatigue, is the fact that I have felt nauseous and dizzy a good portion of the time.

I just hoped that in whatever way my body was adjusting to this new medication, that it would just do it already, because the last few weeks have been brutal. 

I’ve never had such side effects with a medication that have lasted for so long after I first started taking it.   

When I finally e-mailed my rheumatologist, he told me to stop taking the morning dose and just take the night one instead of both.  I guess I waited so long to be optimistic that things would get better, but then when they didn’t, the answer seemed so simple and obvious that I should have made contact with my rheum sooner.

Basically, I’ve been overmedicated.  So it seems highly unlikely that the situation would have resolved itself without a decrease in dosage.

I don’t want to give up on this medication (Tacrolimus) yet.  I know I haven’t been on it long enough to know if it is truly working.  But I also didn’t think I could survive the next month to month-and-a-half of waiting for it work, if I was going to be so non-functional.

I fell asleep in class the other day.  It has really been a struggle for me to get myself where I needed to go.  The fatigue I’ve been experiencing I haven’t seen the likes of since I first got sick, and literally would wake up, go to class, come home and sleep.  Luckily my schedule is a little bit flexible, however, I don’t like having to forego things because I’m too tired.    

I had my first mandatory labs last week.  Does it make me a bad person to wish that the blood work came back out of whack?  Well, that was before I talked to my rheum and he suggested I lower the dose.  But the reality is that the labs all came back normal.  Freakishly normal.  My liver enzymes have never been so normal.

I feel like such a jerk.  I was so adamant about not going on the Rituxan, I dreaded having to complain to my rheumatologist that I didn’t think I could wait the requisite two months to see if this stuff was going to work. 

But thankfully, it doesn’t look like we are going to have to have that conversation.

You truly don’t realize how bad you feel until you start feeling better.  In one day, I graded thirty papers.  I still don’t feel 100%, but I think I can safely say that I am finally on the upswing.  I accomplished more in one day than I have in the last two weeks combined. 

But the thing that makes it so tough to deal with is that you can’t really talk about it.  As I’ve lamented various things, my boyfriend – who has been amazing throughout this difficult period – has told me, “But you have an excuse.”  But I don’t.  At least I don’t feel like I do. 

How do you explain to people who don’t understand that you’re trying a new medication that is supposed to suppress your overactive immune system, and stop your body from attacking your organs and joints, but you just haven’t been able to tolerate the medication?  So you have been sleeping in spurts of three hours, only to be up for an hour or two, and need another few hours of sleep to recover from the time you’ve been up?  And this is after sleeping at least eight hours at night.

“Normal”, healthy people can’t begin to understand that.  And I’m glad they don’t.  But it’s hard to explain erratic, strange behavior when you simply don’t want to talk about it.  When healthy people can’t imagine being on a medication that has such an effect on your body.  Medication is supposed to help, right?  But what happens when the cure is worse than the disease?  What if you have to go through hell to see the light at the end of the tunnel?  If you haven’t been there, you don’t know, you can’t imagine the lengths you will go to in the name of health. 

But it’s so hard.  All of the medications we try for Lupus and RA – or most chronic illnesses, for that matter – have side effects.  They all have their pros and their cons.  And even when they work, they all take getting used to.  So it’s hard to explain how transitioning off of old meds and onto new ones can honestly be worse than your actual illness.  But how do you explain that to people who don’t know?  How can they possibly begin to understand that until your dose gets regulated and your body gets used to a new medication, that it’s full court press?  That it sometimes takes all the time and effort you have?  That it sucks you dry?  That it literally can all but stop you from functioning? 

I don’t know how to explain that to people who aren’t chronically ill.  And so, I think to make it easier on myself, I don’t.  But it might make things harder for me if I don’t.  So if I have to, I just say that I’ve been sick.  It’s not totally a lie and not totally the truth.  And you don’t get any sympathy from anyone if you explain that you are sick all the time.  They really don’t get that, either.

The last two weeks, I have literally had to scrape myself out of bed and drag myself to where I’ve needed to be.  I can’t really imagine how I would have gone on like that if I hadn’t talked to my rheum, and he suggested that I only take Tacro at night. 

I guess I assumed that since Tacro is used at much lower doses for those with Lupus and RA, as opposed to people that have had organ transplants, that I wouldn’t have as many side effects, either, but I was totally wrong on that front.  And this isn’t intended to me a “poor me” post.  To the contrary, I am grateful that, for the moment, every little step does not take an immense amount of effort, that I can do more than just sleep.  It’s too soon to know if the Tacro is working, but at least for the moment, I can say that it’s not destroying my life, either.  Baby steps…

When you have a chronic illness – especially an invisible one – most of the struggle is only seen by those you are most intimate with.  But the struggle feels visible to us because we live it every minute of every hour of every day.  For us, the struggle is never-ending.  We simply cannot turn our illnesses on and off at will, and neither can we truly anticipate what the effects of a medication may be.     

Adding Insult To Injury: What It Means To Be Visible

Well, in some ways it’s adding injury to injury.  Just a few weeks after displacing my knee cap and needing physical therapy, I rolled my ankle in such a way that I sprained my foot.  So I am on crutches and in a boot for about the next two and a half weeks.  And of course, it couldn’t be the ankle of the same leg that was already injured.

But that’s actually not totally the point of this post.  This post gets at something deeper.

I’ve become visible.  For once, I am noticeably injured/in pain.  I’m usually pretty good at hiding my pain from the outside world, but this is not something so easily concealed. 

It turns out that the world is a surprisingly nice place; people hold doors, give up seats, ask if there’s anything they can do for you.

I was even told that I could take advantage of University’s para-transit to get me around campus since I don’t have a car.

For all the days that I’ve dragged myself around, often feeling nauseous, dizzy, my entire body in pain, sometimes feeling at death’s door, only those who really knew me made any effort to help or showed care or concern.

And yet, when I’m on crutches and in a boot for something that is by any standard less severe than my chronic illnesses and much more acute (as it will hopefully be all healed in a few weeks), the reaction of others, total strangers, in fact, has been non-stop. 

I see the pitied looks I get while hobbling around.  I watch as some people avert their eyes and look away. 

Look anywhere but the gimpy girl. 

This shouldn’t surprise me.  I know firsthand what it’s like to live with an invisible illness/disability.  But the point was hammered home to me due to this latest turn of events.

I am insulted by my body’s fallibility these days. 

But I’m also insulted by the fact that a minor injury – although I am fairly out of commission right now – gets so much more air time than something that could potentially kill me.

So on one level, I get it.  I guess what others can’t see, can’t hurt them.  So for the outside world, my chronic illnesses are a non-issue because they don’t exist to others.  But on another level, I don’t get it because my chronic illnesses exist to me in a very real, profound, and life-changing way. 

I would venture to say that, at times, I have been less able than I am now, even in a boot and on crutches, just in a different way.  When every step hurts because you have lupus and rheumatoid arthritis, and just lifting your head off the pillow and getting out of bed expends all of your energy for the day, hobbling along doesn’t seem so bad.

It’s all relative.  I’ve never been on crutches or in a boot before.  Crutches are truly a pain in the butt (and arms and my other leg).  They are exhausting.  And I hate being cooped up – no kickboxing or volunteering for this girl – and trying to heel up before my two big trips, so I won’t have to worry about having to deal with airport security in this regard. 

But honestly, I think I’d rather deal with this for a little while than deal with lupus and rheumatoid arthritis all the time.  This will pass.

For me, something that is temporary is in the spotlight for others.  And for me, what is not temporary, is barely paid attention to by others.  It’s sad.  Sad that we live in a world where only the immediately apparent is paid attention to. 

When I went to the doctor for my foot, the doctor I saw asked me if I was on any medications.  After every one, he would ask, “anything else?”  And resignedly, I would say “yes.”  As I went on with the litany, he asked what I was taking the meds for.  I told him because I have lupus and rheumatoid arthritis.  He asked if arthritis ran in my family and I said “no.”  His response was, “Oh, so you just got lucky?”

Well, I wouldn’t exactly call it luck.  And unfortunately, I do think that this injury is made worse by my arthritis.  For one, my left hip, which is the “good” one, started hurting yesterday, probably because I am using it so much right now.   And I have joint and muscle fatigue from using the crutches that I wouldn’t have if it weren’t for my chronic illnesses. 

I also think that I tend to push my body a bit too hard, and let both the (left) knee and (right) foot injuries go because I’m so used to being in pain and figured they would resolve on their own.     

And they’re the main reason that I’ve been prescribed three weeks on crutches and in the boot, because the doctor thinks it will take me longer to heal with all my other issues. 

And I guess, really, this is the crux of it.  The crutches and the boot are a symptom of a bigger problem for me.  In a way, they are just a visible, outward manifestation of my bigger health problems.  For most, this acute period will end and they will be able to go back to their “normal” lives.  For me, when this acute period ends, I will still have plenty to worry about. 

In some ways, invisibility can be a blessing.  You don’t have to explain yourself all the time and don’t have to deal with people’s uninformed reactions.  On the other hand, though, I think invisibility is really a curse.  I feel like you have to do way more explaining, and even then, people won’t always believe you or are able to understand.  If you’re having a down day, most people won’t know why.       

With visibility comes recognition, although not necessarily understanding.  But just as visibility can bring positive attention, it can also bring negative attention.  You can’t hide, even if you want to, because you stick out like a sore thumb.  

I find that rather than wanting to hide, I want to shout it from the rooftops.  I’ve said several times recently that I wonder if I should tattoo lupus and rheumatoid arthritis on my forehead so I wouldn’t have so much verbal explaining to do.  Because I get very sick and tired of having to explain, even to medical professionals. 

But who knows?  I might miss the crutches and boot for the recognition that they bring, if nothing else.  

“Just Snap Out Of It”

While traveling through rural Michigan by train to visit a friend, I saw a billboard that made me stop and think. The billboard read, “You never hear, ‘Snap out of it, it’s just diabetes.’ So why do some say that about depression?”

After doing a bit of detective work, I discovered that this billboard is a part of a public service announcement from www.DepressionIsReal.org. Another reads, “You’d never say, ‘It’s just cancer, get over it.’” Heart disease is also an illness used as a comparison. The television spot suggests that heart disease is like depression because the symptoms can be ignored; it’s like diabetes because it’s biological, and like cancer, it can be fatal.

In theory, the purpose of this ad is useful – trying to gain the same kind of attention toward depression that other illnesses get. But to my mind, this falls on its face.

Now why do I say that? I say that because of what the ad fails to acknowledge. I find it interesting that what isn’t mentioned is that all of these illnesses; diabetes, heart disease, cancer (sometimes), and depression are invisible. To me, that is the crux of what makes many chronic illnesses questionable. But you don’t look sick. It’s all in your head isn’t a comment reserved for depression.

I think we have all encountered people who have suggested that we could get well if we simply put our mind to it, or those who suggest that we’d be fine if we only stopped taking our medication and exercised more, etc. I have, in fact, basically had people tell me something to the effect of I have a friend who has lupus and she’s perfectly healthy. Aside from the fact that this is a complete oxymoron, the implicit message there is that I should be perfectly healthy, too, even though I have lupus. So I think that to say that people that have “recognized” illnesses are somehow not asked to account for them is absolutely, positively untrue. In fact, I think people that have chronic health problems are asked to account even more, to prove that we are actually sick, and not just attention hogs or drama queens/kings.

This ad also resonates with me because it has been discussed a lot that sometimes there can seem to be a competition in the chronic illness community as to who has it worse. I completely agree that depression deserves the recognition that this ad is trying to garner, but I do worry that it could be taken the wrong way, and sends the wrong message, even with the most well meaning of intentions.

I think I’ve come to realize that the reason why this ad rubs me the wrong way, and also, why I’ve felt pretty down on myself lately, is because I think I have unconsciously bought into this “just snap out of it” mentality. I’ve tried to ignore the recent issues that have cropped up, to no avail. The problems have gotten worse, and now I have several appointments looming ahead of me, with uncertain outcome.

And the reason I’ve let these things go is because it’s hard to be on guard all the time. In fact, it’s exhausting. To have to question every hiccup, every irregularity, to have to wonder if this new symptom is just a fluke, or the beginning of the next stage of an illness, or the beginning of a new illness...When, according to medical definition, your body has gone terribly awry, the new “normal” becomes exactly the opposite. The new “normal” is where everything is abnormal.

So, if even we tell ourselves to snap out of it, of course the healthy people in our lives are going to be wont to do it, too. It’s easy to play that game. Oh, you’ll feel better if you don’t concentrate so much on being sick all the time. Really, is that true? Because in my experience, it is far worse to go in the other direction. Once you’ve let your guard down, it’s easy to leave it down, and to leave the world of illness behind, unfortunately to the detriment of your own health. One of my friends made a good point, though: If it’s not something normal if you were healthy, then you, of all people, should definitely have it checked out. And while this is sound advice, it’s intimidating, too.

I guess the point of all of this is that even when illness is staring us in the face, even when it’s written in two and a half feet tall letters, it doesn’t means it’s done right. And all of these reminders don’t make it any easier to deal with. I know it’s there, I know I’m sick, because my body keeps reminding me…

When Professional Oaths Mean Nothing And Male Power Means Everything

So, this may be a little off topic, but I have to vent. Today, my friend and I were in a *minor* car accident. The weather was horrible and we got stuck as we were trying to turn a corner. My friend was outside of the car trying to push it, while I was inside the car, when we were rear-ended.

We weren’t hurt, but my friend wanted to call the police so that they could take a report. The person who rear-ended us did not want my friend to call the police because she did not want *more* points on her license and was driving her friend’s car.

We waited quite awhile for a police officer to arrive. When he showed up, he was attitudinal and belligerent, and there was clearly an issue of power. The police officer let the other driver off because she was cute and upset, worried that her driving record would be ruined. A quintessential damsel in distress.

It ended up that while we were waiting for things to get figured out, two more cars crashed, luckily not into us. The police officer told us that we should leave the scene because the situation was dangerous, and that if we really wanted to file a report, we could go to the police station to do it.

So that’s what my friend and I did, feeling that the officer had acted inappropriately and not done his job. At the station, the power dynamic only worsened. The police officer there really wasn’t taking things seriously.

When we went to the police station to file a report, the police officer seemed very confused about what had happened, as were we. The officer there called the officer who had reported to the scene and kept saying things such as “supposedly” and “they claim.”

This took me back to two experiences in relation to my health that I would rather forget. The first is my first rheumatologist appointment, when I felt like a deer in headlights. I was in a total fog, like this can’t possibly be happening to me. Similarly, this whole situation is completely shocking. Here, we were victims being treated like we had done something wrong.

The second is when I got my medical records. My CT scan report read, “22-year old female complaining of right flank pain.” This “complaining” was seen completely as hearsay, suggesting that the pain was not really believed and the only way to substantiate it was via the CT scan, just as our report of the accident was seen as not true, because the responding officer hadn’t filed a report.

Finally, I told the officer at the station that he wasn’t listening to us, and that this wasn’t so much about the damage to the car, but how the situation was handled. Basically, mid-sentence, the officer got very forceful with his language and told me to “go take a seat.”

Need I remind you that I’m 4’11” and 90 pounds? My language wasn’t half as forceful as the officer’s was. I was simply trying to make a point, but of course, the officer was not going to admit that he or the responding officer were being blatantly sexist and that’s why they weren’t taking the situation seriously. And when the police officer at the station asked for my information, he clearly wasn’t listening and I had to repeat the information no less than three times.

Just like doctors, police officers and other public safety personnel are supposed to serve and protect. But this doesn’t always happen, which is clearly the case here. Plus it’s nearly as difficult to get a copy of a police report, as it is to get your medical records. And it’s your own personal information.

Police officers, upon receiving their diplomas take the following oath, “I will preserve the dignity and will respect the rights of all individuals […] I will discharge my duties with integrity and will promote understanding and conciliation […] I will act with honesty, courtesy and regard for the welfare of others, and will endeavor to develop the esprit de corps […].”

This is strikingly similar to the Hippocratic Oath taken by doctors. Observe:

“I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug […] Above all, I must not play at God […] I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick […] I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm […].”

It’s odd to connect two seemingly separate spheres of life, but I think this is an apt comparison, and a very unfortunate one.

I think in all of this, sometimes doctors and police officers act as if they are above the oaths they take, and if not that, that they are more powerful and worthy of respect than their patients and community members. Sometimes the need for respect and compassion takes a backseat to power and control, in times when the patient or community member needs it most.

I guess I thought that America in 2009 was a little bit more progressive than it is. Just as I don’t deserve to be treated like some dumb kid by my male rheumatologist, I don’t deserve to be treated like an overly emotional female by a cop with a giant male ego.

Not only is this situation disheartening, but it is emotionally draining, as well. The treatment by the officers was much more emotionally damaging than the accident itself. And that just isn’t right. If you can’t see it, it didn’t happen or doesn’t exist. Puts a whole new meaning on invisibility.

While I am thankful that no one involved in this mess was physically hurt, the demeaning treatment and feelings of powerlessness will last for a long time.

"Seeing Is Believing"

You look at me
And think that looking also means
Knowing who I am
But underneath the polished veneer
That you take to mean an easy life
My life is far from easy
Some people would even call it hard, difficult
Some might even say it sucks
So I can no longer linger on what you may think
Of me
Or not think of me, for that matter
Because I am
A multitude of things
And whether or not you choose see it
I am me

I had jaded myself into thinking that I would make this poem longer. But to no avail, I finally decided to post it. This poem explores issues of judgment and invisibility, and while it does not explicitly talk about illness, it is in reference to such illness-related issues.