The Mind Is A Terrible Thing To Waste…

So I’m not going to risk it.

I made a command decision.  I am not ready to expose myself to the risk Rituxan poses to my brain.

If I only had RA, I would be far less concerned.  But because I have both Lupus and RA, I am especially concerned about the risk of Progressive Multifocal Leukoencephalopathy (PML) – an incurable and nearly always fatal brain disease.

I know that with any treatment, there are risks.  And maybe I’m naïve to feel that the risks to my liver and kidneys are one thing, but risks to my brain are another. 

I have accepted the fact that my body doesn’t work right, and I have learned to cope with that, but the thought of my brain turning to mush is just too much.    

In this chronic illness game and on this chronic illness journey, there are always decisions to be made, decisions I never expected to be faced with this early in life or at all, for that matter. 

And we lose pieces of ourselves along the way.  Literal pieces that come from biopsies and blood draws.  But figurative pieces, as well.  We learn to dissociate during medical procedures.  We give pieces away when we give more of ourselves than we ever thought we would.  Like I said I would never do self-injection, and then eventually, I did.  The threshold of what you are willing and not willing to do in the name of health seems to always be slightly in flux.   But there has to come a point, unless you are desperate enough, that you put your foot down.  That you say no, I can’t, and I won’t. 

I’ve always said that I don’t want to stand in the way of my treatment due to fear. But I didn’t want to have to worry for as long as I was on Rituxan and for a significant amount of time after I was off of it that every time I forgot a word or tripped, that I was literally losing my mind. 

To me, my mind feels like too big of a piece to potentially lose.

And there is so much falling into place in my life right now, and while feeling good isn’t necessarily one of them, there’s so much I want to do and accomplish.  And I can’t do those things without my mind. 

Obviously I know that there are no guarantees.  And no one could tell me for sure that I would or wouldn’t get PML if I took Rituxan. But PML would be almost completely out of the realm of possibility if it weren’t for Rituxan.  So part of me felt like if I had the opportunity to prevent it, I should. 

And this isn’t to say that one day it might not be the right treatment for me.  I know I’m not functioning at a super high level right now, but I can get out of bed.  And it’s not like if I don’t take Rituxan, I am going to die.  So for right now, it’s not the right treatment for me.

Like I say, this hasn’t been an easy decision.  I’ve vacillated back and forth, back and forth.

 

I thought a lot back to the quote from Shelby (Julia Roberts) in “Steel Magnolias”: “I would rather have thirty minutes of wonderful than a lifetime of nothing special.” 

And I realized that that’s the opposite of how I feel right now.  Was it worth trying to get through everything happening in the next two and a half years to potentially not get any more time than that?  My answer is no.  It has to be.  There’s so much in the coffer that I could explode, but I can’t share some of it just yet. 

The big thing is that this is the first time since I got sick that I’ve looked into the future, really looked into the future, and saw something there besides illness.  I know that sounds sad, and maybe it is, but it’s also the most hopeful I’ve been in a long time.  And I didn’t want to take a chance of being robbed of that future for something that my doctor wasn’t 100% sure was the best option for me. 

I guess if you go with your gut, you can’t make the wrong decision.  And in this case, both my head and heart were sending me signals that this wasn’t the right choice for right now. 

The first infusion was scheduled for next weekend, and the next for two weeks after, like it’s supposed to.  But I cancelled them.  And oddly, I feel a hell of a lot more empowered for making the decision not to than I did for making the decision to start them in the first place.

So I’ll be starting Tacrolimus in the hope that, that will provide some relief of both my Lupus and RA symptoms.  And in my view, the biggest risk for me with Tacrolimus is that it won’t work.  And if that does happen, I’m no worse off than I am right now, before I’m on it.

And maybe Rituxan will one day find itself back on my treatment plan.  But I don’t like the idea of just picking random drugs from a list of those available.  I want to make sure that what I try is not only worth the risk, but also makes sense based on my body’s past response other medications.

My other issue is that – while the risk of PML is about .001, which is undoubtedly very small – I’ve been in the .001 before.  I’ve had things happen health-wise that for all intents and purposes shouldn’t have happened.  So when told that the odds are .001, it’s easier for me to focus on the .001 than the other .999. Because I want to be avoid being in the .001.  I have too much happening right now, and I need my brain to do it. 

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?

Teachable Moments In Chronic Illness Land

At the beginning of this academic year, I started taking part in a program called the Family-Centered Experience.  I noticed a flyer about it at one of my clinic visits over the summer and applied for, and was accepted, into the program.

The program is “a required course in the University of Michigan Medical School curriculum.  Through FCE, first- and second-year students engage in understanding the personal side of medicine through firsthand encounters with patients and their families” (http://www.med.umich.edu/lrc/fce/).

The patient taking part in the program has to have a chronic illness.  And normally the program requires a two year commitment, but I could only commit to this year as I plan to finish my dissertation this summer and move elsewhere.  However, several students were “orphaned” (for whatever reason, like the patient moved), and needed a new patient for one year, so I was paired up with two students that needed to go through their second year with a new patient. 

“Families who volunteer to participate in FCE open their lives and give our students invaluable training that cannot be duplicated in any classroom or clinic.  In the role of mentor, volunteer families teach students how to see the patient as a whole person and how illness affects all aspects of their daily lives, beyond just the diagnosis of their disease.  Our doctors-in-training apply what they learn from these mentors to their clinical training and beyond” (http://www.med.umich.edu/lrc/fce/).

I was amazed that such a program existed, and at the hospital where I receive the majority of my medical care.  It seems to me like a rather evolved sense of patient care to realize how important getting to know patients as people really is. 

These aren’t scenarios or role plays.  These are real doctors and real patients. 

And it’s not just about the illness or the specialty.  It’s about the patient.  And it’s not just about the physical.  It’s about quality of life. 

I think it’s important for doctors to learn these things early in their careers.  By the time they are actually doctors practicing on their own, it’s too late to develop a sense of patients as human beings.  If you’ve been taught to look at patients as their registration numbers or their illnesses, that’s how you are going to treat them.  But it shouldn’t, and doesn’t, have to be that way.  Doctors can walk the walk and talk the talk medically, but that doesn’t mean they’ll be able to relate to patients in any meaningful way. 

There is a very helpful guidebook that is provided to both patients and med students.  We didn’t work directly off of it because of the unique situation of meeting me in their second year.  But it provided a good idea of what the program is about.   

For our first visit, the med students came to my apartment and spoke to my boyfriend and I.  I shared my story with them, they asked questions, and then they came to one of my rheumatologist appointments.  It felt a little strange as I don’t normally take anyone to my appointments with me, but at the very least, they provided good company while I waited for my appointment to start.

It’s caused me to look at my experiences as a patient, both positive and negative, in a critical way.

This has been a learning experience for me, too.  My rheumatologist measured the width of my jaw opening.  He’s never done that before.  Mine was 20 centimeters.  Then he measured one of the med students.  He was in the normal range, which is 35 to 50 centimeters. (At least now I can’t be accused of having a big mouth)

Then he tested the range of motion of my elbows and hands.  He had the other med student stand up and do the same.  I was shocked to see how limited my range of motion was compared to her.  I’ve never seen myself in comparison to someone “normal” like that before.  It was really striking.  There’s no denying that I have these illnesses and that they have an impact on my daily life.  It’s funny that that’s the lesson I take away from this experience, because I guess I was already supposed to get the fact that I’m chronically ill.    

He also asked me how long it takes me to get going in the morning.  I told him that it takes about an hour before I can be functional enough to really face the day.  Then he asked both med students how long it takes them.  They both thought for a minute and said they didn’t really have to think about that.  Maybe it takes them five minutes or so.  Imagine, my rheumatologist said, being so stiff that it takes you an hour, not even just to get clothes on, but an hour to get just enough energy to think about getting clothes on.

This has made me look at my illnesses in a new light.  They are powerful.  They affect all facets of my life, whether I admit they do or not.  But it wasn’t until I was given the opportunity to look from an outsider’s view that I realized how much different my life is from someone who is my age and not sick.  There is so much less to think and worry about.  They can stay up until three a.m. studying, get up at six a.m. and face a 12-hour day ahead without second thought. 

And we wonder why doctors can seem so clueless about our illnesses, when, even we are, as patients, sometimes clueless about our own illnesses.  I guess since I have been feeling physically okay, I was a bit in denial about the fact that these illnesses are a part of my life.  But they are and they will be forever. 

And we talked about a lot of illness experiences.  The fact that medications are so expensive and that it is very hard for patients to learn to self-inject.  It was really the first time that my rheumatologist validated some of these more emotionally-laden experiences.  It’s nice to know that he’s thinking about these things.  And it encouraged me that he stressed that med students should be aware of these issues, as well. 

He said he hoped that by learning about my experiences would make these med students more compassionate than doctors like him.  And I told him that comparatively, whether he is willing to admit it or not, he is pretty high on the compassion list as far as doctors go. 

And I’d like to think that he learned something too, that he sees the impact that the way he cares for his patients will impact the way this generation of med students, the next generation of doctors, will care for their patients.  

And I think programs like these are great.  They provide experiences that can’t be learned or taught inside the classroom.  There should be more of them.  I think something like this should be a standard curriculum in any medical school education.  And it needs more awareness within U of M, as my rheumatologist had never heard of the program before, despite the fact that I know he works closely with med students.

And by requiring students to make home visits and attend doctors’ appointments with patients, allows students to come down to the patient level, and experience things on the ground and in the trenches, which as doctors, they may never get to experience otherwise. 

I want the experiences I’ve had with chronic illness to count for something, and whether I’m impacting doctors or patients, I believe that we have to have a holistic approach when it comes to doctoring.  We’re all in this together, even though sometimes it doesn’t feel that way.  When we have to deal with cranky nurses and stupid insurance companies, the human side gets lost.  Patients are people.  And doctors are people, too.  We are the same species, even though it sometimes feels like we are from different planets.  The doctor-patient relationship should be a mutually-beneficial and symbiotic relationship. 

I’m grateful that I had this opportunity to share my experiences.  I hope that my students felt they learned something from me.  I know I’m not necessarily the “typical” patient.  And it was nice to see doctors on the other side of the continuum, who are new and eager and ready to learn, who are not totally set in their ways and are still moldable.  It gives me hope that the next generation of doctors will see the importance of compassionate care and getting to know their patients on a deeper level than “Patient is a 27-year-old Caucasian female with lupus and rheumatoid arthritis.”

Every patient has a story.  And those stories deserve to be heard.