Wednesday, March 11, 2015

The Cortisone Shot Chronicles

Originally, I was planning to give a play-by-play by day post-cortisone shot.  But there’s really no point.

I cannot believe how life-changing one shot can be. 

If I knew this is what would happen, I would have done it 7 years ago.  You get so used to living in pain that you don’t realize what it does to you until you’re not in pain anymore.  

As I mentioned in a previous post, I received a cortisone shot for bursitis in my hip.  I have had hip pain since I first got sick, but have never treated the hip directly. 

I was super nervous about it.  My doctor was very encouraging, (and truth be told, I wanted to chicken out) but ultimately, I realized that I didn’t really want to deal with my severe hip pain anymore if there was a potential to remedy it. 

My rheum walked me through the whole thing as she did it.  First, she cleaned the area.  Then she felt around and told me to tell her the spot that hurt the most.  Then she marked it.  Then she sprayed lidocaine on the area – there is lidocaine in the injection too, to minimize pain.  Then she cleaned it again.  And then she did the injection.  The whole process probably took less than seven minutes.  It was more nerve-wracking than anything else, just the anticipation of not knowing what to expect. 

Overall, the injection wasn’t super painful, just annoying.  The pain afterward was low and dull.  That night, the pain went from low and dull to more persistent.  Certain movements hurt, and it was hard to bend directly from the hip.  It was also painful to sleep on. 

But not joint painful.  A different, achier kind of pain, sort of like when you get a flu shot. 

The night I got the shot, my boyfriend encouraged me to use an icepack or take some Aleve, but I didn’t because I really wanted to be able to gauge my pain, feel exactly where it was coming from, to see if the pain was actually from the injection or pain from my hip.

Despite this improvement, I probably won’t run any marathons – which I didn’t do pre-illness – and no offense to my friends @hurtblogger and @titaniumtriathlete – but I am moving with a spring in my step that hasn’t been there in a long time. 

It actually gets me kind of emotional thinking about it, about how one little shot can work wonders.

I no longer fear the cortisone shot, but now I fear the pain that is no longer there.

And then I wonder.  Is the minimal pain that I am sometimes feeling really there, or am I so used to the pain that it’s gone but not forgotten?  It’s like having phantom pains when the offending appendage is no longer there.

I think the minimal pain I am in now is related to muscle memory, having to relearn all these different positions that my hip hasn’t been able to get into, like folding my leg under me, sitting cross legged, or sitting on the floor and being able to get up, myself, without help.  It almost feels like I pulled a muscle or something.

But every twinge of pain makes me wonder if the cortisone shot is losing its effectiveness already.

When I got three days of steroid infusions right after I was diagnosed, I didn’t really savor the pain-free time I had.  I took for granted that eventually the pain relief would wear off.  Ultimately, I only got a month of relief from the infusions. 

And I’m not going to make that same mistake now.  I’m going to do what I can with the time I have, with the pain-free hip that I now have.

When I saw my therapist, she was like what’s up with you?  You seem different that last week.  Lighter.  And you’re smiling…Yeah…

I got a shot in the my hip...

This is me…jumping for joy…

Hip, hip, hooray! (Oh man, that was a really bad pun)

Thursday, March 5, 2015

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!      

Monday, March 2, 2015

Failure Does Not Come Easy

It’s funny – as in not – when you write a post about loss and later in that same day, you experience another loss, but of a different kind.

Failure, of any kind, has never come easy to me.  And I think I’ve become even more stubborn and pigheaded since I got sick. 

If someone tells me I can’t, it only motivates me to show them that I can.

My schedule has been very difficult for me, which I’ve talked about a lot here – balancing work, school, life, and illness. 

I know that I’ve worked my ass off in this job, and that I wanted this job more than anyone else they interviewed.  And that wasn’t enough.  There was nothing more that I could have done.

I want to work, so just let me work. 

I know that there are a lot of people out there with lupus and RA who can’t work, and I know how lucky I am that I can.    

This job, which came about after I left my internship, when my dad died, gave me a reason to get up and get out of bed in the morning.  I had somewhere to go.  In the emptiness that New York can feel like, I finally had a place where I belonged. 

A lot of people have been telling me lately that everything happens for a reason.  But ever since my dad died, I’ve been having a crisis of faith.  I felt called to this position, like this is what I was meant to do, and now I’m questioning everything.   

I’ve been bitten by the advocacy bug, it’s in my blood.  And it has felt so amazing to advocate for patients other than myself, and to take what was a profoundly negative experience in my life and turn it into something positive. 

I know something will come along; I have too many degrees for it not to.  But I was happy here.  I felt at home here.  This job was reason enough for me to force down my feelings about this city and stay. 

Clearly, it wasn’t a definite. 

In my view, it was 98% assured, and therefore, I find myself falling yet again into that ugly 2% of this never happens to anyone, but it happens to me. 

It’s frustrating to be somewhere, where you feel like you’ve found a place, and then be told that you’re not.

I’m a professional, and I’m going to work until they tell me I’m done.  The patients don’t deserve to suffer or experience my frustration at this situation.  They are the number one priority in my work, and I am going to keep it that way.   

Aside from the fact that I love my work and the people I work with, which is the number one most upsetting part of this, I now have bills to pay, and not working is going to complicate that. 

And truth be told, I know this is totally a first-world problem, but this is the first job I’ve ever lost.  In the past, I have completed that phase in my life, and it was time to move on, in a way that was very mutual, if not exclusively guided by me.  So that’s a hard pill to swallow.  I’ve been rejected from plenty of jobs I’ve applied to, but never one I was already working in. 

I know I’ll get through this, I always do.  I’ve already started looking for other jobs.  But that doesn’t mediate the hurt and the sting that I feel right now. 

As the BF said, this isn’t the worst thing that has happened in the last year, which makes it even worse.    

But, nudge, nudge, wink, wink, I am going to need a job ASAP, especially once May hits, so if anyone has any ideas or leads, please let me know.  I am not too proud to ask for help…