Tuesday, September 25, 2012

Can You Say Chronic Illness Burnout?

There’s a lot going on in my life right now.

I had a repeat colposcopy yesterday, a psychiatrist appointment on the 1st, a kidney ultrasound on the 4th and a follow-up appointment with my PCP on the 8th. 

And I feel like shit. 

If I wasn’t completely, totally, and utterly exhausted from this flare, I’d be totally exhausted by the litany of appointments I have coming up. 

And the last colposcopy I had sent me into a four or five day flare, so the fact that this procedure is happening right now is really sucky. 

Chronic illness is unpredictable.  So is life. 

But it hurts to walk, to breathe, you name it.  Climbing the stairs to my third-floor walk-up might as well be climbing Mount Everest right now. 

I wonder how much of yourself you have to give up on this chronic illness journey.  It’s not just about the blood they take and the biopsies and the litany of other procedures. 

At what point do you go from being yourself, a human being, with thoughts and feelings, to just being a patient, a number, and nothing more?

Right now I feel like a piece of meat.

I get poked and prodded, told things I don’t want to hear, and I guess I’m supposed to sit there and take it, without showing emotion or disdain.

This journey is hard, and some people make it harder.

I need a break from all this.  The last few weeks have actually made me feel like a sick person.  And I don’t like that.  At 27 years old, there should be a whole lot more to my life than doctors’ appointments, medical procedures, and not feeling well. 

And to some extent, there is.  My family and friends are very supportive and willing to help in any way they can.  And my boyfriend has been by my side every step of the way.  So that’s not what’s missing in this equation.  What’s missing is some relief.  What’s missing is a medical professional really taking a holistic approach and actually caring how I feel, both physically and emotionally. 

But that’s not what’s happening.  Instead, I feel like a cow being led to slaughter.  And a human being, a person shouldn’t have to feel that way.  

For the first time in a long time, I feel damaged.  I feel less than.  And it’s not a good feeling at all.

Tuesday, September 18, 2012

What Do You Do When You Feel Like You Are Running Out Of Options?

I am feeling very discouraged right now.

That’s the only way to describe it, even though it’s actually much more than that.

My PCP called me at the end of last week, telling me that my Creatinine is up (more than it was two weeks ago), Liver Enzymes are up, white blood cell count is down, and anti-double stranded DNA is up (this is a test that measures lupus disease activity).  As far as the liver and DNA go, they are both double what they should be.

Right now I feel like I’m fighting a losing battle.

Am I ever going to find a medication that I can be on safely?

What if we go through every possible drug and treatment and nothing works?

Part of me wants to say screw the meds.  With the way I feel right now, I might as well not be on anything.

It’s hard enough to treat lupus or rheumatoid arthritis on their own, but together, these persnickety diseases are a force to be reckoned with. 

I really don’t know what to do right now.

And my GI doc’s office is breathing down my neck for me to do a bowel cleanse, after my insurance declined a prior-authorization for Amitiza. 

But how am I supposed to do that when my whole body hurts, I’m too tired to get out of bed, and when I do get out of bed, there are so many more harsher realities that I have to face?

I was told by my original PCP that there was nothing more she could do for me.

Am I going to hear that from my rheumatologist soon?  That we’ve tried everything, and nothing seems to work the way that it’s supposed to?

I’m hurting right now, physically and emotionally. 

I want to be strong, but I’m so tired.  I’m so tired of feeling sick and tired.

I take my meds when I’m supposed to, even the Humira shot that makes me cringe.  I try to eat healthy.  I try to exercise, even when I’m feeling like crap.

But I just can’t win.

And we can’t get ahead of these illnesses.  Just when we think we’ve found something…bang…we were wrong.

And it’s making me question the future.

I’m so confused right now.  I have no answers and a thousand questions. 

It’s easy not to question when you’re feeling good. 

And in some ways, it should be somewhat validating when you aren’t feeling particularly well and the tests confirm that.

But now when I see a number that I know is an extension of my doctors, I don’t answer the phone.  I just watch it ring, not wanting to hear the next piece of news they are about to deliver. 

I’m definitely starting to believe that no news is good news.

And we’re in this stupid freaking holding pattern all over again.  Go off meds and feel like crap.  If the liver levels go back to normal, it was the meds.  If not, well, than it could be something else.  And it sucks!  I hate it!

I’m not really sure what the goal of treatment is anymore.  And I hate to sound that despondent, but I’ve been off treatments as much as I’ve been on them. 

I just want to feel good.  Right now I’d settle for okay, almost normal. 

I really, truly believe that the best years of my life are ahead of me, and I want to be able to fully enjoy the positive moments.  Because right now, I definitely feel like I’ve had my fill of the negative ones. 

Wednesday, September 12, 2012

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 _.” 

Monday, September 3, 2012

It’s Nothing Personal, But Then Again, It Is

I used to take everything illness-related very personally.

Well, who am I kidding?  I still do.

But I’ve been doing a lot of thinking lately, since I heard from my rheumatologist at the end of May that I needed to start seeing a nephrologist (kidney specialist) because my creatinine was elevated, and then finally meeting with the nephrologist at the end of last week.

Kidney involvement is common in lupus, and I guess I had been holding on to the idea that I had, by some miracle, escaped it.

But it looks like I haven’t. 

And in the past I probably would have seen this situation in the following light: Then I must have failed somehow.  If my diseases seem relatively stable, but I’m still having problems, it must be my fault.

I know that’s the way I felt when I was taking Methotrexate.  Every time I’d get a call from my rheumatologist’s office that either my liver levels were elevated or my white blood cell count was down, it felt like I had done something wrong, like there was something more I should be doing to make sure that it didn’t happen again the next month.  But try as I might, we eventually stopped doing the MTX dance because my body couldn’t handle it.

I was off of MTX more than I was on it.  And when we finally made the decision to take me off of it, the liver levels and white blood count returned to normal almost immediately and stayed that way. 

We certainly gave it a fair shot.  But I remember feeling pretty devastated every time I got a call telling me that my doctor was concerned about my lab work.

And I was equally, if not more, devastated, when my doctor e-mailed me about my kidney function.  It was a shocking blow to me, something I should have always had in the back of my mind, but really wasn’t expecting.

Yes, it’s my body.  But if there’s anything chronic illness has taught me, it’s that I’m not totally in control of my body.  I thought I was living a pretty healthful lifestyle until I got sick. 

So yes, there is certainly an element of personal responsibility in managing chronic illness.  Am I taking my meds?  Am I taking them correctly?  Am I going to doctor’s appointments and following up on test results?  Am I alerting the proper physician when there are issues? 
But that’s where the personal responsibility stops.  If we try a medication and it doesn’t work, or it works but is doing negative things to other areas of my body, that’s not my fault.  If my kidney function suddenly and inexplicably changes, I’m not a bad person or a bad patient. 

I’m a lupus patient, and really, that’s not all that surprising in the grand scheme of things.

But maybe I don’t want to know anymore.  If it’s not one thing, it’s the other.  If it’s not the liver, it’s the kidneys.  If it’s not the rheumatoid arthritis then it’s the lupus and vice versa.

This song and dance is getting exhausting.  Equally exhausting is being lost in the ether of the medical industrial complex. 

The nephrologist ordered labs and a kidney ultrasound.  The office scheduled my appointment for the beginning of March and the ultrasound for the same day.  When I told them that she wanted me to have it done sooner, they refused to schedule it any time other than the same day.

And nearly a month ago, my gastroenterologist prescribed Amitiza for me, which is a drug for chronic constipation, which has been quite debilitating for me since I got sick.  The pharmacy told me that they needed prior authorization.  When I went to the pharmacy again, they told me that they were still waiting.  I called my doctor’s office, and the person I spoke with had no idea what I was talking about.  She finally found the information and said she would hand it off to a physician’s assistant.   

School starts in the next few days and I’m exhausted.  I’ve spent so much of my life over the past five years sitting in waiting rooms, meeting with doctors, having procedures done, taking medication, and pretty much fighting for my life, especially when it ends up in the hands of people who frankly just don’t care.

But it’s nothing personal.  And maybe that’s the problem.

Because in reality, it’s all personal. 

I really do try not to take things so personally, but when my life and my health are in the balance, it’s hard not to.

(On an unrelated note, once school starts and I get back into a more steady routine, I pledge to blog more.  The last few months have just flown by.)