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!      

Taking A Vacation From My Vacation

That sounds totally weird, right?  Taking a vacation from a vacation.

But when you’re chronically ill, sometimes that has to happen.

I recently traveled to California, and upon returning to New York, I felt like I needed to recover.

Don’t get me wrong.  The vacation was great and very relaxed.

And yet, staying up for almost 24 hours between leaving New York and going to sleep in California, two-, six and a half hour flights, and a three hour time change, is a lot for my body to handle. 

Thankfully, I was with people who were more understanding than most.  We didn’t plan any activities that would be super strenuous or taxing, but I still needed to pace myself. 

Saturday afternoon I took a nap, which was much needed since we had plans in the evening.  Sunday we drove to Sonoma, so that was pretty relaxing.  And Monday we explored San Francisco. 

Lately, I’ve felt like I am flaring.  Like really.  Which hasn’t happened in a while.

I’ve been totally exhausted, to the point that I was when I first got sick.  I’m in a lot of pain.  And most recently, I’ve had the tell tale pain under my right rib. 

And I don’t want to blame it on vacation.  Because if you can’t sit back and relax when you are on vacation, when can you?

It seems like getting back into my daily routine of activity and commuting has hit me really hard.  I definitely needed a vacation from that – and in that respect – I don’t think my vacation was long enough.

In reality, vacation is a word I haven’t seen in a while, and it was a much needed break. 

But it has made me realize that I need to re-evaluate things.  I need to have a contingency plan.  I need to figure out how much vacation time I need after a vacation. 

Does it matter if it’s a car trip versus a train trip versus a plane trip? 

Does it matter if I end up in a different time zone? 

Does it matter if I’m traveling alone or with other people?

Again, don’t get me wrong.  The vacation was totally worth it.  We saw good people, ate good food, and soaked up some much needed sun that we hadn’t seen in about four months during the eternal winter we’ve been having.      

So if you’ve been wondering where I’ve been, blog-wise, I was on vacation, and then since then, I have been recovering from my vacation.

The True Meaning Of A Flare

After ending my travels about three, nearly four, weeks ago, I was totally exhausted.  I assumed that it was just jet lag.  But as the days move forward, and the start of school approached, I realized that the exhaustion I was feeling was not related to traveling, at least not completely.

And after going to kickboxing this week and barely making it through, my fear, what I had been denying for the past several weeks, was confirmed:

I’m flaring.

I honestly can’t truly remember the last time I had a full-blown flare like this. 

While the Humira is keeping my joints fairly mobile, it hurts to move.  I hurt from the soles of my feet to the top of my head.  And as the days move forward, I am noticing stiffness creeping back in. 

And I’m exhausted.

With lupus, it’s the type of tired-ness that doesn’t go away, no matter how much sleep you get or how much coffee you drink.

And it’s mind-numbing.  It’s hard to concentrate on anything. 

The bed and the couch are my best friends right now. 

The other day, I showered and dressed at 2 p.m., went to class, and came home and got right back into bed. 

When I posted about the flare on Facebook, someone asked me what I meant.  So I got to thinking about how you explain the true meaning of a flare.

If you look up flare in the dictionary, you’ll find things like an eruption, an outburst, most having to do with light, but all having to do with a certain amount of intensity.  And this is, while we aren’t quite talking about the same thing, fairly accurate. 

But when those of us with lupus, rheumatoid arthritis, or any other conditions in which you can experience flares, what we are referring to is a flare-up, which is a significant and usually unplanned increase in symptoms.

For me that means pain and fatigue…times a million… 

It’s like my body is sending off flares, signaling that there’s a problem or I need rest or something.  That’s what I am still trying to figure out – what exactly it is that my body needs right now.  

Usually when I flare, my illnesses feed off of each other, so it’s not just one or the other that’s flaring.

It’s both.

I feel it in my muscles and my joints. 

It hurts my arms to type this post, and it hurts to hold a book in my arms for too long. 

I already had scheduled an appointment with my primary care doctor, so I decided to go and see what she thought I should do.  She got in touch with my rheumatologist and he thinks this could be side effects from the Humira.

Oh, wait!  I read about this.  Yes, in the side effects of Humira was the phrase “lupus-like syndrome.”  And the thought crossed my mind, “Why would I want that when I already actually have lupus?” 

This might sound stupid, but I feel like the last time I was really flaring like this, it only lasted a few days, so I pushed through.  But this time, it’s not subsiding.

I think the traveling, the change in weather, and the fact that I guess I was due for a flare are all contributing to my current situation.  And I guess the Humira is, too. 

It’s hard to explain how your whole body can hurt, but you can still look semi-okay on the outside.  For those who really know me well, they can tell by my voice and my posture that I’m not feeling well.  But for the rest of the world, I feel like I’m dying inside, but in some ways, I have to go on living. 

I’m not in a position in my life right now to really be able to nurse a flare.  It would be nice, but I have teaching responsibilities and a dissertation to write. 

I’m starting to learn the wisdom of the daily nap for people with lupus.  When I was on vacation, it was nice to be able to sleep late, take an afternoon nap, and feel pretty good.  Maybe I’ve gone too far in the opposite direction.  There were a few days right before school started that I pushed really hard to get a bunch of things done.  And then I needed a day to recover. 

I didn’t miss this. 

Everything feels like work.  Climbing the three sets of stairs to my apartment is an activity ripe with exhaustion.  So is cleaning.  And grocery shopping.  Things that feel like nothing on a good day, or are normal activities for most people, are feats of superhuman proportions. 

There are definitely days where I leave lupus and rheumatoid arthritis behind, in the dust, they don’t stand a chance in my tracks.  And then there are times like these, where their ever-presence makes it impossible to forget that life isn’t always like this.  That this too, hopefully, shall pass.  And the sooner, the better. 

I wasn’t planning on submitting anything for the September edition of PFAM, but decided that this post fits nicely with the theme of “You know you have _ when _.”