Admitting The Inevitable: When Medications No Longer Work

During the #ChronicLife experiment, in which I live tweeted for 48 hours, I announced that my current medication regimen, the one I’ve been on the longest ever, is no longer working. 

I got a ton and love and support about it, but supporters seemed more upset about it that I am.

I think I’ve been in denial about it for so long that when I finally admitted it to myself, I had already made peace with it.

For me, if I can go a year without either plateauing, or getting liver or kidney toxicity from a medication, that’s a success in my book. 

Despite some dosing changes, I have been on my current regimen – albeit with dose changes – for around two years now. 

So it was inevitable that one day, it would stop working or I would have to go off of it. 

And I know I am far from alone in this game of cycling through medications.

Some medications are automatically off the table.  Because Humira caused my lupus to flare, anti-TNFs are out for me completely.

And how do I know that the medication is no longer working?  First of all, my fatigue is awful.  Most days I come home from work/school, eat dinner, and end up falling asleep by 9 o’clock.  My boyfriend will wake me up at 11:30 or so, tell me to brush my teeth and take my meds, and then I go back to bed.

Second, I’ve been having significant stiffness to a degree that I haven’t experienced in a long time, if ever.  I can walk down stairs okay, but I can barely walk up ten stairs without my body stiffening to the point of not being able to move. 

Of course, all of this is compounded by the cold weather, but it is not the weather alone.

Again, this was inevitable.  It was bound to happen sometime.  It wasn’t an if, but a when.

So I finally saw my rheum.  I laid everything out for her.  The fatigue, the stiffness.  The fact that my right hip and foot are in almost constant pain.  In fact, the nodule on my right foot has gotten so bad that she could clearly see it through my sock. 

And I admitted to her that I am somewhat frustrated with my quality of life at the moment.  If I do anything during the week, I come home completely exhausted and I end up going go to bed super early.  On the weekends, I can stay up later, but all I do is homework, often not getting out of my pajamas.

And my rheum agreed.  She said that my degree of fatigue really concerns her, and given that and my stiffness, believes I am flaring.

Why does that always surprise me?  Why don’t I realize on my own that I’m flaring?  I guess when I think of a flare, I think of widespread pain and not being able to get out of bed.  But it makes sense.

So I am going off of Tacrolimus and starting on Imuran.  I’m not starting it until the weekend, just to be safe, so I’ll write another post about how that goes.  My rheum said that if I have GI issues, I won’t be able to stay on it, so I hope that doesn’t happen.    

She also suggested a cortisone shot for the bursitis in my hip.  I’ve had issues with my right hip since I got sick, but it has progressively gotten worse, and I’ve never done anything to treat it directly.

I was really hesitant to do the injection.  It was one of those things I convinced myself I wouldn’t do.  I’ve heard really mixed things, with some people saying it’s nothing, and other people saying that it’s the most painful thing they’ve ever experienced.

I was pleasantly surprised.  It wasn’t too bad.  My rheum was really good about telling me what she was doing every step of the way.  I felt the needle go in, and I felt the cortisone go in, but it wasn’t particularly painful.  Now my hip feels a bit achy and weird, but nothing I can’t handle.

And that’s really what made me go through with it.  It couldn’t hurt more than the pain my hip is already in.  And it really didn’t. 

But it frustrates me that the threshold of what I will do in the name of my health is always changing. 

I said I would never self-inject, and eventually, I did.  I said I would never get a cortisone shot, and now I have.  I think in wanting to gain some measure of control over these illnesses, I create boundaries, but those boundaries become cloudier the longer I live with these illnesses.

I told my rheum that I really hope the day comes when I can walk into her office and tell her that I feel awesome and don’t know why I’m there, instead of coming in with a laundry list of problems.  She said she would like that, too. 

And we had a few laughs along the way, which I think is a good sign.  If you can laugh with the person who pokes and prods you, who touches your painful parts just to make sure they’re painful, then you’re doing pretty good.

I see my rheum again in six weeks, which is the shortest amount of time between rheum appointments that I’ve had since I first got sick.  I don’t really know whether I should be happy or sad about that.

But I do think this appointment was really good.  I feel like my rheum really listened to my concerns and really heard me.  And I think the changes are good, too.  I hope they are worth it.  And of course, I really hope that they work!      

What It Feels Like…To Have Lupus and RA In The City

For some people, moving to New York City is the pinnacle, a true Cinderella story.  Not for me.  For me it has brought up a lot of issues that I didn’t really have to think about before.

In Michigan, I had a 10-block radius in which the majority of my life took place in.  Of course, I went beyond that, but it basically assured that even on bad days, I could get where I needed to go and get home, even if I was feeling pretty bad.

That’s not the case here.

I also have never had to deal with a commute before, let alone one that takes me so far away from home.

Some day I can tell my future children that I had to take a bus, subway, and train – over an hour commute – and then walk 25 minutes uphill to get to school.   

And let’s talk about anxiety.  When I first got sick and was diagnosed, my world felt totally crazy, so I began taking anxiety medication.  New York, by design, makes my anxiety worse.  It’s sensory overload times a thousand.

The subway is its own particular brand of anxiety-inducing.  Imagine what it feels like to be surrounded by darkness, in a metal contraption that is moving at high speed.  For me, I feel totally claustrophobic.  Not to mention the fact that the train tends to rock back and forth in such a way that you feel like you are on water rather than land.  Due to lupus, I have balance issues, which aren’t conducive when you have to stand up on a crowded subway.  Lupus also causes me to be very sensitive to smell – so I will smell something – and it will literally stop me in my tracks and make me nauseous.  Not a good thing when you are riding the subway in ninety degree weather. (I’ll let your imagination do the rest)   

And it’s just like who ever came up with the idea to stick giant tubes with wings in the sky?  It gets people where they need to go, to be sure, but it doesn’t have to make people feel good while it’s happening.

And the city is totally unforgiving.  It’s crowded and fast-paced.  If you can’t keep up, you don’t stand a chance.

When I get home at night, I get into the elevator, and I almost always collapse against the back wall.  I am exhausted to the max.  While other people might have energy saved up, my energy stores are beyond empty, and sometimes I wonder how I will be able to get up and function the next day.

In a city characterized by walking and public transportation, it doesn’t leave much room for those of us with health issues.  We are at the mercy of what is available to us.  The subways are full of stairs, and if you take them two at a time, you’re likely to be left in the dust.

I feel like I’m back in my first year of grad school in Michigan, when all I did was go to class, sleep, eat, and read.  That’s pretty much all I have energy for at the moment.   

And in the concrete jungle, my joints take a beating.  But right now it’s the mind-melting fatigue that I’m really trying to manage.

In general, for me, RA means mainly joint pain and fatigue.  Lupus brings with it nausea, dizziness, headaches, and rashes.  I sometimes wake up feeling like I’m hungover, like I’ve been hit by a truck, and flattened against the wall. 

Right now, we are living with my boyfriend’s dad until we find our own place, which means we have the luxury of a doorman and an elevator.  But my boyfriend tells me that every amenity adds to monthly rent, and that having an elevator can add up to $500 more to your rent a month.  I lived on the top floor of a three-floor walk-up in Michigan, and there were days where I would practically have to crawl up the stairs at the end of the day. 

I wasn’t made for this always-on-the-run, push-your-body-to-the-max lifestyle.  It isn’t me, and it’s not conducive to trying to manage multiple chronic illnesses.

In the city that never sleeps, all I want to do is crawl into bed.

Chronic Illness And Decision Fatigue

I am a notoriously terrible decision maker.  Just ask my boyfriend.

But the reality is, I am good at making the big decisions, but when it comes to things like what to make for dinner or where to go, I just don’t care.

I mean, I do care, but I don’t.  Because to me, those little things don’t matter so much.

As chronically ill people, we make so many decisions.  All the time.  And most of the time, they are big important things that can really impact our lives.  Like medications, procedures, you name it. 

And the thing is, by the time I’ve made all of the important decisions, I don’t feel like having to make more decisions.  

It’s decision fatigue. 

And I have a feeling that a lot of us with chronic illnesses experience this. 

Decision fatigue can happen to anyone, but seems particularly apt in the case of chronically ill people.

Being the Type-A-er that I am, I have always had a hard time saying “no”.  In the past, this has caused me to overcommit, to the point of being extreme.

Over the past year, however, I think I have done a better job of saying “no” to things or skipping things that would be an energy suck that are not worth it. 

Mainly, though, I have had a significant amount of time where I’ve been unable to function, which has necessitated clearing my schedule of everything but the most necessary things that I have had to do. 

This, of course, ebbs and flows, but there are times when my body says “no” for me.  When I don’t have any other choice but to say “no”. 

And it is still hard for me to say “no” or to admit that I can’t do everything and have to pick my tasks wisely. 

And sometimes, even when you want to do something and you do it, you have to be okay with the consequences.  

I have to accept the fact that when I fly to New York on Thursday evening, have an event there on Friday, and fly back to Michigan on Saturday morning (necessitating getting up at 6 a.m.), I am going to pay for it.  But it was totally worth it.

There are other times, though, when doing something just isn’t worth the price you pay. 

And that’s why we have to pick our battles and commitments wisely.

 

There are certain things I won’t give up on, no matter what.

But there are other things that just aren’t worth the cost.  

This is a really hard fact to accept.  And I’m totally sure I’m there yet.  But every time I overdue it, my body rebels.  And reminds me that I’m sick and don’t have unlimited energy stores. 

So many of us suffer from regular fatigue, and I guess decision fatigue is just another part of being chronically ill.

Letting Illness Win?

I hate the rhetoric of illness that talks about fighting and hard won battles.  I don’t think I’ve ever really liked it, but especially not since I got sick.

How can you battle something that you can’t control?  How can you fight against something that you didn’t ask for in the first place? 

Is it really a fair fight when eventually, in the end, illness will win out?

I really struggle with this.  Am I fighting?  Am I winning?  Am I losing?  What is going on here? 

The thing is, right now, I feel like illness is winning.

Lately the mornings are tough.  I wake up, and it takes me hours to get going. 

I’m tapering down on the Prednisone, and I hate it.  I want to be off of it, but it sucks. 

The pain creeps in.  The exhaustion is unparalleled.

I sleep for 12 hours and I could probably use 12 more.

The bed is too comfortable and I’m too tired to resist.  I am letting illness win by giving in?    

It’s 9:30 at night.  And I had such grand plans with my love, but I can barely lift my head off the pillow.  I’m practically comatose.

But he brings me water and my pills.  And mouthwash to gargle with and a cup to spit it into, because I think it’s gross not brushing my teeth, but I just don’t have the strength to get up and do it.

And these are the moments.

Is illness winning when expressions of love so deep are shown?  When someone is there for you so completely, and you just don’t have the strength to worry about how vulnerable a position it is to be in?

Clearly not.

But is it winning, and I have to admit defeat, when the only thing I can do is sleep?

If you’ve never experienced fatigue like this, it’s unimaginable.  It really is like swimming in and out of consciousness, because the sleep is so deep, and yet, not quite restorative.  It’s maddening.  

Am I letting illness win if I start treatment with Rituxan?  There are a lot of risks, but without Prednisone, I don’t know if I’ll be able to function.  So if I don’t try Rituxan, I risk not being functional enough to finish my dissertation and move forward with my life. 

I don’t want to feel like I’m fighting and battling an un-winnable fight.  But by not fighting, what am I left with? 

If I’m not fighting, am I just living? 

If I try and convince myself that I don’t need meds, will my illnesses simply go away and disappear?  I don’t think so. 

Sometimes we have no choice but to give in to the pain and the fatigue.  It’s not really a matter of listening to my body, because my body basically shuts itself off and I have no choice but to comply.

Am I fighting to win or fighting not to lose?