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?

Blame It On Prednisone

I knew I was in for it last week having three different doctors’ appointments.

I’ve gained weight.  I’m not happy about the situation, but I am aware of it.

And it’s unnecessary to repeat this fact.  I know it, I’m trying to deal with it, and I don’t think it takes years of medical school to be able to “diagnose” that.  It is what it is.   

It’s a known fact that carrying extra weight around is not good for arthritis, and yet, we get put on medications that are known to cause weight gain, Prednisone being the main culprit. 

(And to be clear, we are talking about a 10-pound weight gain compared to my normal weight and a 15-pound weight gain compared to my ideal weight.  But for a person who normally weighs right about 100 pounds, 10 pounds looks and feels like a lot, at least to me).

For me, 5 mg of Prednisone does nothing.  20 mg makes me crazy, and apparently so does 10 mg.

Honestly, I really thought that if I was on less than 20 mg a day, I wouldn’t have any problems.

But lately, I’m stressed, anxious, and emotionally volatile to a degree I have not been before.

I really thought I was about to lose it.  I thought to myself, “This is what happens when graduate students are writing dissertations and they go nuts.  This is how it feels because it’s happening to me.”

And I was really convinced that the world was going to end at any moment.  I feel like time has gotten away from me and there isn’t enough time to do everything that needs to be done.

I wasn’t sleeping.  In a month, I could count three days in which I actually felt like I had restorative sleep.  And my brain never shuts off.

I know it’s something that not everyone likes to talk about, but I will admit that a significant member of my medical team is my psychiatrist.  Very early on in my illness experience, I developed severe anxiety.  The decision to go on yet another medication was not an easy one, but was definitely necessary for me. 

So last week, I went to my psychiatrist and we upped my dose of anxiety meds.

But my psychiatrist also mentioned that all of the things I was telling her – unmitigated weight gain, my anxiety and emotionality, and my inability to sleep, are all new symptoms since I saw her three or four months ago. 

And since that time, the main thing that had changed was that I had started back on daily Prednisone.

It was like being hit over the head with a frying pan.  Everything makes so much sense now.  Of course it’s mainly the Prednisone.  Why didn’t I think of that before?

Prior to that, over the last few years I would say, I have been on Prednisone on an “as needed” basis, which for me meant once about every three or four months. 

Because I hate the dreaded P with a Passion.  And if the last few months are any indication, I know why I hate it.  It dulls my pain, but it increases things you don’t want increased. 

And as I learned when I saw my rheumatologist last week, while Prednisone is good for pain management, it is bad for symptom management.  And my RA has started to come back with a vengeance.

For the first time, my rheumatologist admitted to me that he doesn’t think long-term Prednisone is a sustainable option for me.

I couldn’t agree more.  It’s not a sustainable option for my waistline, my anxiety, my sleep schedule, my boyfriend, or my life in general. 

So right now I am tapering down on the Prednisone and I will be starting Rituxan at the beginning of March.  This new treatment option is scary, I must admit, but it would be great if it works.  I’ll of course be writing about this a lot more in the weeks and months to come, but for now, I’m glad I have a scapegoat that is so easy to blame for some of my behavior over the last few months.

Although in some ways, it kind of feels like a copout.  Okay, let’s blame the Prednisone.  But on the other hand, it really does make sense.

I just truly haven’t felt like myself and everything has felt like too much.  It has really been a struggle to keep it together. 

I guess I took for granted that since I was feeling relatively okay physically, it didn’t matter how I felt mentally.  Or that since the Prednisone was doing what it was supposed to do for the pain, it didn’t matter if it was throwing all of these other things off. 

And I’m glad that someone on my medical team was able to pinpoint this, almost instantaneously. 

But I can’t help but wonder: If I suddenly lose my filter, and start saying whatever comes into my head, can I blame that on the prednisone, too?

Lupus And RA Deficit, And Finding A Treatment That Works

Lately, I’m starting at a deficit.  I don’t wake up feeling energized and refreshed, even when I sleep for 10 or 12 hours. 

My boyfriend has made the point that I’m not a morning person.

That hasn’t always been the case.

I used to be a morning person, a late night person, pretty much an any-time-of-day person.  That was before I got sick. 

Now, when I wake up stiff and in pain, and it takes me time to get going, it’s my arthritis that’s talking, not my personality.

When I was in the midst of the latest flare I had, I wished that I could just go to sleep and wake up when the flare was over.

But there’s so much I would miss.

And the thought of sleeping my life away is scary and depressing.

Sometimes you do have to drag yourself out of bed and will yourself to face the day.  I get that.  And sometimes you feel better after you do, but sometimes that’s just totally impossible.

My flare seems to have abated, which means that it looks like Humira caused my lupus to flare.  Which means that I am off Humira for good, and it’s back to the drawing board.

We knew from the beginning that one of the side-effects of Humira is a lupus-like syndrome.  This worried me from the start, since I already have lupus.  And we should have worried, because that’s exactly what it did to me.

I ran into my rheumatologist the other day.  I had been meaning to e-mail him, but hadn’t got around to it.  He suggested that for sure we go back to low-dose daily Prednisone. 

He also suggested adding Tacrolimus to my treatment regimen.  I did some looking around.  Most of the articles about Tacrolimus and RA, and the few on lupus, are all relatively recent, within the last three years.

I’m not convinced.  This drug started out as an anti-organ rejection drug – like CellCept, which I was on several years ago – has been used to treat colitis, and is now being used for people with RA.  The safety and efficacy, from what I read on PubMed, is mixed. 

I wish this was an easy decision, an open-and-shut case.  But it’s not.  The way I’m feeling right now, I could live with this.  On the other hand, I get tired a lot more easily than before; I get winded from walking up three flights of stairs to my apartment.  There are subtle changes I see that don’t make me happy.  I’m not back to where I was pre-Humira or pre-Humira-induced lupus flare.  And that’s frustrating.  It’s also getting colder, and the winter always does a number on my joint pain and mobility. 

This is really the first time that I’ve had a lot of questions after reading about a treatment.  Because while we can’t plan for the things we don’t know about yet, we can plan, and should be vigilant about, the things we do. 

I worry that my chronically elevated liver enzymes, which my PCP recently postulated may be autoimmune hepatitis, my ongoing gyno issues, and the fact that I would like to have a child someday, are all making me reason against Tacrolimus.

I feel like before I start TAC, I need to see a liver specialist, talk to my PCP about my gyno issues, and see if I can meet with a high-risk obstetrician or genetic counselor to talk about what we would be looking at if I begin TAC sometime in the next few months. 

As much as I appreciate my rheumatologist for all that he does for me, he hasn’t been very good at approaching the “How will this impact my future fertility?” question.  He seems to think we should only factor it in when it isn’t hypothetical anymore.  But it’s not.  It’s not a question of if, but when.  And it is also something that I really care about. 

Maybe it would be different if the situation was “take this or you die,” but that’s not the case right now.  And I hope it never is.

Is it bad that the thought of daily Prednisone gives me nightmares?  I’ve always said that I wouldn’t let fear get in the way of my treatment. 

So I’ll say it again.  I’m torn.  Go back to the drawing board and experiment with a new med or tough it out for the next few months and see if I can make it on my own? 

I could tell by the look on my rheum’s face that he has doubts, too.  And that concerns me more than anything else.

I’ve realized lately that I have to pick my battles and commitments.  I can’t do everything.

There are some really promising things happening in my life right now, and while I would love to focus on the good, I am filled with anxiety about the future.  I wish there was a clear-cut answer here.  I wish I knew which decision to make that would be the most efficacious. 

On the one hand, I won’t know if I don’t try.  On the other hand, though, what if I am putting myself at risk for worse things than what I am facing right now? 

And I appreciate so much that my mom is doing some of her own research on TAC, and that my boyfriend says that he will support whatever decision I make.  My health has to come first, but in this case I don’t really know if that means starting TAC or not, especially someone who can’t be on Methotrexate, like me, and cannot be on a biologic, either.

If anyone has heard about Tacrolimus, or on the off chance that you’ve taken it, please, please, please comment or e-mail me.  I would love to hear from someone who has been on it successfully for RA.    

Las Vegas Is Not For The Faint Of Heart Or Chronically Ill

I recently spent four days in Las Vegas.  I was there for an academic conference.  But since I had never been to Vegas before, I tried to have a bit of fun, as well.

There were two ways to treat this Vegas trip.  The first was like many of the blowhards who were attending the conference – to totally and completely hate Vegas without really experiencing it.  Or to go full tilt and experience Vegas, and love it or hate, but coming to that conclusion in an “educated” manner.

(I’ll admit that it was slightly ironic to be presenting about being chronically ill against the backdrop of a place that is so much the antithesis of that)

And then there’s the reality of my chronically ill life.

While I had fun, I paid a price.

There was a bit of drinking (not much by Vegas standards because my tolerance is low because I drink so rarely now; see picture at the end of this post) and gambling, a bit of hot pink feathered hair extension debauchery (good for the next three to six months; see picture at the beginning of this post (and I’ll admit, I’m totally digging it)), and overall, a bit of wearing scandalous clothes and impossibly high heels.  Throw in a Cirque show and some shopping, and you pretty much have a quintessential Vegas experience.  Tame by many standards.  Apparently, not tame enough for me, so my body now tells me.

But we’ve all got to let loose every once in a while, right? 

I learned an important lesson.  Vegas is not for me, and I suspect, not for many chronically ill people.

Vegas is just too much of everything. 

First off, everywhere you turn is another opportunity to be totally overstimulated.  It’s exhausting trying to keep up with the sights and the sounds and everything else. 

The heat was horrible.  The temperature averaged 105 degrees for each of the days I was there.  You would walk a block and be soaking with sweat, not to mention completely parched.  Although, for me, one unintended consequence is that the heat may have saved my joints from an even more untimely demise. 

Going outside to the heat and inside to the full blown air conditioning, and going to bed late made me feel completely run down and exhausted.  Not only was I eating at crazy times, but more healthful choices aren’t easy to come by in Sin City.  The portions were ginormous.  Honestly, I couldn’t wait to come home, and get back to real life.  I need consistency to stay as well as possible, and if Las Vegas is anything, it is definitely not consistent. 

I had overextended my hip a bit in kickboxing earlier last week, and as my time in Vegas progressed, it only got worse.  Las Vegas is a place where you can’t really avoid walking around.  And like everything else, the walking is just too much. 

I finally caved and took a Prednisone because the pain was wearing on me.  I was getting short with people, and I realized that it wasn’t something they could understand.  Unless you’ve experienced pain where you can literally feel bone grinding against bone, you can’t begin to imagine the wherewithal it takes to power through it. 

While the Prednisone greatly improved my hip pain, two days later, and I am already seeing the effects on my face.  The cystic acne is back.  And as much as it’s unsightly, it’s so painful.  This is just one reminder of why I hadn’t taken Prednisone in months before I took it the other day. 

I got some pretty severe blisters on the top of my feet from my shoes rubbing the wrong way walking through the airport.  I hoped maybe the Prednisone would aid in healing, but the blisters are open and raw.  It kind of looks like a dinosaur took a bite out of my foot.  And you know, maybe one did.  I’ll never tell.  What happens in Vegas, stays in Vegas.  Or so “they” say…

I guess it’s fitting that my return to Prednisone, even it was only a momentary lapse (I hope), happened in Vegas, because Vegas is life on steroids.

While “healthy” behavior is not espoused in Vegas, it’s clear to me that the smoke and heat and walking involved and the late nights are meant for a crowd who are “healthy” by “normal people” standards. 

The thing is, this whole experience brings up the fact that I’m 26 years.  Wanting to explore Vegas like other people my age isn’t so pie-in-the-sky.  But the reality is, by virtue of my illnesses, I have limitations.  And I definitely overdid things.  But it was hard not to.

For me, it was just too much.  I felt overwhelmed.  And now I feel pretty jetlagged and awful, and am trying to recover.  I also made the severe mistake of taking the red eye home.  It probably would have been fine if I wasn’t already exhausted, and then was put through the ringer by security.  I left Vegas at 11:15 p.m. Vegas time, 2:15 a.m. my time, and arrived in Detroit at 6:05 a.m.  The plane was cold, so I was pretty stiff and in pain by the end of the flight.    

I’m glad that my summer traveling is finally coming to an end.  I’m exhausted. 

So viva, LV NV!

Or maybe it’s more of ADIOS, LV NV.  I’ve had my fill, won’t be missing you, and probably won’t be coming back any time soon.  However, I will say that I could never really have fully understood what Las Vegas was actually like without experiencing it firsthand.  So I’m glad for that, and now it’s back to reality.