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.

The “I” Word

Injectable.  Injection. 

This is the very thing I have been trying to avoid since I first got sick. 

I’ve never been a fan of shots, IVs, or needles of any kind.  While I’ve gotten more used to them as time goes on and I have had to stare more and more of them down, I still have a hard time stomaching the idea of sticking a needle into myself.  And I haven’t had to.

But that’s about to change.  Because I saw my rheum today.  

He measures how I’m doing by the mobility and inflammation in my elbows and wrists.  And needless to say, he wasn’t impressed.  He said that he thinks we can do better than where we are at.

He asks me if I think we should make a change in medication or keep things as they are.  I tell him that that’s a difficult question for me to answer.  I never really know what to say to that question.  If I say yes, am I admitting defeat?  And if I say no, am I being headstrong?

It doesn’t matter.  Because I can tell that he has an answer. 

So what is his answer?

A higher dose of Methotrexate (MTX).  I’ve been on 10 mg of oral MTX for over a year.  We believed that 15 mg was a better dose for me, but I couldn’t handle it.  There were too many side effects taking it orally.

So now I’ll be injecting myself once a week, in the hope that things will improve. 

I’m frustrated.  Where does it start and end?  I keep skirting a boundary and crossing lines I once told myself I would refuse to cross.  On the other hand, I have refused to be on daily Prednisone.  And I feel as if I can’t refuse something new or different until I’ve given it a fair shake. 

Especially since there is an unfortunate reality that I continually have to face.  After a year or so on a med, my body seems to plateau and the med seems to lose efficacy.  While I try to be optimistic, this is a continual struggle with my treatment.

And my rheum talks about quality of life.  And the potential for me to get a Cortisone shot in my hip.  But we will wait on that.  One thing at a time.  One foot in front of the other. 

And that’s when reality hits me like a shit ton of bricks.  This is a forever thing.  This may be the best I will ever feel again.  I have to do things that I never imagined would ever be a defining factor of my life. 

I’ll admit, I’m feeling a little sad right now.  Spending over two hours at the hospital today, seeing my rheum, getting educated about self-injection, getting a flu shot, and getting blood drawn, I feel like a sick person.  I feel overwhelmed.  It’s a lot to take in.

Seeing my rheum every six months gives me a false sense of security.  I was beginning to think that I was handling things on my own.  But how can you handle things that you can’t control?      

I can only hope that injecting myself becomes second nature, something that I don’t give much thought to.  Because right now, I’m filled with apprehension.  What if I mess up and do it wrong?  What if it makes me feel worse?  What if, what if, what if? 

But I can’t focus on what ifs.  I have to focus on what is, and what will be.    

Am I going to let a little needle get in my way? 

I hope not.

I hope that other I words will rise above the inevitable. 

Invincible.  Indestructible. 

That’s me.

I’ll keep you all posted on how my first injection goes. 

Wish me luck!

(Oh yeah.  In other news, my insurance rejected my latest physical therapy referral…)

Down Like A House of Cards?

“Do you ever feel like a plastic bag,

drifting through the wind

wanting to start again?

Do you ever feel, feel so paper thin

like a house of cards,

one blow from caving in? […]

You just gotta ignite, the light, and let it shine

Just own the night like the 4th of July

’Cause baby you’re a firework

Come on, show ‘em what you're worth

Make ‘em go “Oh, oh, oh”

As you shoot across the sky-y-y [...]”

- “Firework,” Katy Perry

Things are going okay.

But I am worried, very worried about the months ahead. The reason being is the following list:

I had my last physical therapy session last week, and also saw my GI doc (see post here).

I started teaching a course for spring term last week. It meets Tuesday, Wednesday, Thursday, and goes from May 3 to June 16. I also defended my prospectus on Monday. For those who aren’t familiar with graduate school protocol, defending the prospectus – which is basically an outline of the dissertation – is kind of a big deal.

And I had an appointment with my rheum today.

Given everything that’s done, I still have the following to do:

- May 14 - Arthritis walk
- June 5 - Lupus walk
- Somewhere in between - Conducting interviews for dissertation
- July 2-6 - California
- July 12-13 - Blogger event (location TBD)
- July 14-17 - Illinois
- Somewhere in between - New York
- August 20-23 - Las Vegas (American Sociological Association conference)

I’m putting this list here as much for you as for me.

Can I do it? If you look closely, the beginning of May will be very busy. June won’t be too bad if I use the time when I don’t have anything to do to rest. July is going to be hard being in California one week and Chicago the next. I don’t exactly know where the New York trip will fit in, or if it may even be postponed until the fall.

The thing is, I slacked off a bit this past term. I was on fellowship this year, so didn’t have classes or teaching, and I was able to just cruise. I expected things to fall into place with my prospectus a few months earlier than it did, but I was dealing with family stuff, and then a break-up, so I had a lot going on emotionally.

Ultimately, if my dissertation research gets done this summer, the end result will be what I wanted. I guess it doesn’t matter as much how I got there.

I wondered what my rheum was going to say today when I told him about my summer schedule. But there’s not much I can do about it. I could drop the conference in August, but that’s not even the biggest concern at the moment. The concern is that I don’t travel well. My body takes a beating. It looks like Prednisone is going to be the go to.

I admit, I get an adrenaline rush. This must be what you used to carry me through, from a summer internship at a newspaper working 100 plus hours per week to writing a 125 page honors thesis. But it doesn’t work anymore.

I get it for a time, and then I crash.

I really see now how I used to function before. It’s like episodes of freakish productivity. And when I wasn’t sick, that was sustainable for much longer periods of time.

It frustrates me. I want to punch something. I can’t be the person I used to be, but in some ways, I don’t know how to be the person I am now. How do I get done what I need to without killing myself?

Why is that so often our worth is measured not by quality, but by quantity? I would rather do a few things really well, and keep my health, then to do a bunch of things that are only okay.

I truly wonder how much more I can handle. Like what event will be the final straw, will put me over the edge, and will deliver the striking blow? Because I don’t think it’s a matter of if, but of when. When will I not be able to handle it anymore? When will the next heartbreak be too much?

When I feel this way, I’m reminded of how few people get it. How few people care to know. Illness is much less the enemy than my head and my heart. And my heart is far more the enemy than my head. I feel too much, and illness taught me to do that. Illness has taught me that I’d rather be in pain than be numb. But being numb certainly has its allure.

Last time I saw my rheum, he asked if I had the same boyfriend. I was happy to report yes, and honestly thought that at this most recent appointment, six months later, I would be happily sporting an engagement ring. But since I have no ring and no boyfriend, I really didn’t want to have that conversation with my rheum. Why does this make me feel like such a failure, especially when I wasn’t the one who gave up on the relationship?

And I wonder. Will he notice the pattern? Patient seems happier and healthier when in a relationship.

It’s not that I can’t do life on my own. I can, I do. But I don’t really want to.

I know my rheum to be pretty laid back. He isn’t an alarmist. So today was weird. We had a few good laughs, but he has some serious concerns, about what seems to be a chronically elevated diastolic blood pressure (like we’re talking in the 90s) and heart rate. He’s worried, given the propensity for those with lupus and rheumatoid arthritis to have cardiovascular problems. 10 tubes of blood, and three urine samples later, my rheum is going to wait for the results, talk to my PCP, and get back with me before I fly the coop to do everything that I have to do this summer.

But I can’t keep doing this. I can’t keep saying my health is a top priority and then treat it like an afterthought. Something’s gotta give. Or I’m going down like a house of cards.

What To Expect When You’re Unsuspecting (Or The Things Your Doctor Doesn’t Tell You)

I started physical therapy for my gut last week. I was hoping to write a post about it once it was over, but that is at least six weeks away, and I really needed to vent about the experience.

I really didn’t know what to expect going in, but I assumed that you just lay on a table and someone palpated your stomach in such a way that it would get things moving. Not so. Are you ready for this? Brace yourselves…

Someone takes their finger and sticks it up your butt. And they manipulate the muscles that way…

(Read until the end. I promise, it gets better.)

I had no idea. And this is partly my fault. I did not ask my GI doc what physical therapy would entail. Mainly because I didn’t want to know the answer, because if I had known the answer, I probably would have refused. And because, at the time, anything, well, almost anything, sounded better than having to have surgery.

But shouldn’t someone have warned me? Shouldn’t I have had the opportunity to escape before I was knee deep in the situation? Given the tests that my GI doc has sent me for, I guess I shouldn’t be all that surprised, because they go from unpleasant to unpleasant-er. But don’t good doctors tell their patients what to expect from therapies and treatments? I’ve said it many times before: my GI doc is an uber-specialist, but the more time I spend under her care, the more I think it’s time to jump ship and find someone else.

Don’t get me wrong, the physical therapist was kind and gentle. But when someone’s got their finger up your ass – I’m sorry, but I don’t know a nicer way of saying it – at some point you just have to dissociate, like your body is there, but your mind is not. That’s the only way to get through it.

Modern medicine continues to disgust me with some of the antiquated methods it seems so hell bent on using. Really? In the 21st century, we really have no better way of dealing with a barely active colon other than to stick something up there, especially since I thought the goal was to get stuff out?

Some of you may be shocked by my openness here. But the truth is, there is no privacy anymore. No matter how depersonalized I felt things were in the past, this experience beats them all. I’m sharing with you all because I feel like I have a relationship and rapport with my readers. And because I’ve opened myself up in far more intimate ways to a total stranger.

I feel violated. Like a piece of meat that has to lay there and take it. I am just a specimen. My feelings and emotions don’t matter. I should remain mute. My boundaries have been crossed, and now there’s no way to go back.

As patients, are we allowed to have boundaries? Or being chronically ill, is it simply a fact of life that our boundaries will be tested?

When I went to my first rheumatologist appointment, and he had me get 27 tubes of blood drawn, that certainly tested my boundary of breaking out into a cold sweat for just one tube. In that moment, I had to grow up, and I had to accept the situation because I really had no choice. Had I resisted, I would have probably been considered non-compliant, and refusing something that was directly related to being diagnosed, would have seemed contradictory.

So should I just expect that from now until forever my boundaries will be tested and my threshold for what I am able and willing to handle will continually go up?

Have you ever found yourself in a compromising situation that you can’t get out of because your doctor put you there?

I so did NOT sign up for this!

And don’t worry, the irony of the fact that my physical therapist’s last name is BUTTS, isn’t lost on me. Only in my life would something like that happen. And I have to say, there needed to be some humor in this situation.

And a friendly warning: Don’t get caught unawares, because someone might just come and stick their finger up your ass. Yes, apparently there are people who spent years being educated on how to do this. And they enjoy it! Well, maybe they don’t enjoy it, but they don’t dislike it, either. There are no ifs, ands, or butts about it.

Okay, I’m going to stop now…

Tie Me In Knots; I Won't Come Undone

“Our lives begin to end the day we become silent about things that matter”

- Martin Luther King, Jr.

I have the right not to remain silent. Hence, this post will emit all of the things and feelings I have been dealing with over the past few months.

Thanksgiving was terrible. Christmas was non-existent, and I already feel like the first days of 2011 have flown by without me noticing.

I’ve felt a bit guilty about not sharing recent events with my readers, but I didn’t want to seem like a complainer. And I didn’t know how to talk about it all in a coherent way. So this post may only be semi-coherent.

The last few months have been filled with more calls from doctors, doctor’s appointments, and tests than I care to remember.

I had more disagreements over appointments with the GI people, I had to contact patient relations again, and I was finally told by someone in GI that I wasn’t being treated properly and that the way I was being treated goes against protocol.

In between the other chaos, I got separate calls from my rheum’s and GI’s office telling me that separate labs had come back abnormal. I was taken off Methotrexate. I am back on it now, on a lower dose. That which does not kill you, right?

I also had a defecography and colonic transit test. While it’s amazing how comfortable you can become talking about the inner and outer workings of your gut, I’ll let you discover exactly what these tests entail on your own, if you so desire. I will say, however, that the colonic transit test is a weeklong commitment. And what a commitment it was.

I don’t know how people that have mainly GI symptoms associated with their illness(es) do it. It is exhausting, embarrassing, and disabling, not knowing how your body is going to react, and not being able to trust that it will work properly.

On the one hand, my life has been overwrought with health stuff. On the other hand, I have found myself on the other side of things.

I won’t say too much about the non-health stuff because it is not really mine to tell. But it has been like watching a speeding train derail, and not having any way to stop it. Now I know what it feels like to be in the position of those around me who have had to deal with my illnesses and have no way to really help me.

I’ve also learned that you never really know what is going on in someone else’s life or home unless they tell you about it. You can think that these are the happiest people in the world, and their lives could be falling down around them.

How much can one person take?

I wish there wasn't a before and after. I wish there was just life, and a life that wasn't always spiting and thumbing its nose at me

I have a feeling that this might be one of those posts that I look back to and shake my head at, wondering how I really could have been feeling this low. But right now, I am, and the only way I can really think to help myself is to write the hell out of it.

Honestly, I’m pretty convinced that these people don’t know their head from their butt, and given that they are GI people, that definitely isn’t a good thing.

And does it make sense to anybody that my two and a half day hospitalization was billed to my insurance as outpatient care, which meant that I had to pay for part of it?

I am also sick of living in a country where people who are down on there luck get no compassion whatsoever.

I didn’t really make resolutions this year. Mainly because what I would really like to do is go into bed, put the covers over my head, and not get out until all of this crap is over.

I am exhausted…already…physically and emotionally.

I ran into my GI doc at the hospital, on the way to my volunteer post, and she had no clue who I was. There was zero recognition. I have seen this woman many, many times. My rheum has recognized me “on the street”. This really frustrates me. I want to trust this doctor and what she has to say, but how can I? Her inability to recognize me makes feel worthless and invisible. It makes me realize that in the medical system, I am just a patient, a number. My personhood is in question. Because I am sick.

I’m sick of being the person that gets treated like crap, but takes it with a nod and a smile. That acts like it doesn’t bother me. Because it does. And now I want to rip everyone’s heads off at any chance I get. But I don’t. And I won’t.

I’m trying to get things under control. In the near future, I’ll be starting physical therapy for my colon. Not sure what this will entail, but needing it to work so that I can avoid surgery. My doc thinks that this is not related to my rheumatologic issues. How can it not be? I’m still searching for more concrete answers, and hoping they come my way very soon.

And I’m doing what I can to support those around me who are dealing with difficult things.

So that’s where I stand. And that’s the key thing. Despite being totally overwhelmed by things, I am still standing. I may be a bit worse for the wear, but I’m doing the best I can.

Worst Date Night Ever (And It’s All My Fault)

Is illness always in bed, a third party waiting to get in on the action?

I spent this past weekend in the hospital with my boyfriend, spending from around 5 o’clock Friday night until a little after 4 a.m. on Saturday in the ER, and was admitted from Saturday morning to Sunday afternoon.

I had, had pretty severe pain in my right side for about four days. I do sometimes get a pain in the area of my right rib if I am having a flare, but this was not like that, and not in the same place. And the pain wasn’t getting better, despite me trying to nurse it. I knew that going to the student health center would be pointless because if they felt around and saw where I was tender, they would assume appendix and send me to the ER. So in a way, student health would simply have been an unnecessary step.

My boyfriend basically agreed that given my complicated medical history and medication regimen, the only real choice was the ER. So we put aside our Friday night (not) in favor of some time in the hospital, as if my BF doesn’t spend enough time there already, right?

As per usual, it wouldn’t be a medical experience for me if there weren’t some down right ridiculous moments. But that’s how I have to act in these situations, otherwise I think would totally go crazy.

I told the resident that for a body that is rejecting its own organs, it has certainly been good about keeping all the useless ones, too. She told me that was the best line she heard all day. No problem, I love to entertain.

So the running hypothesis was that I had appendicitis, which is what I thought, too. And that because I’m immunosuppressed, my body wasn’t acting exactly like a classic case. So I had an ultrasound, which ended up not even showing my appendix. Then I had a CT scan and was told that I did have appendicitis and would be having surgery. Then a few hours later the attending radiologist disagreed with the original reading of the CT, and that while I didn’t have appendicitis, I did have something going on GI-wise, especially since I had three doses of morphine and very little relief. I won’t give any more details – GI stuff can be downright nasty – other than to say that I have had some GI issues in the past, and that the problem got a bit away from me. I had been having some issues off and on for several weeks and kept saying that I needed to get in touch with my GI doc.

The resident asked how long me and my BF have been married (she obviously didn’t realize he’s only my BF right now). We replied that we aren’t married. She said that it was an awkward moment, and proceeded to tell me that the pregnancy test they did – standard operating procedure – was negative. And I said, well, it would have been a lot more awkward if you would have asked how long we’ve been married – and we said we weren’t – and the pregnancy test was positive. Maybe you had to be there, but it was pretty funny.

And you know how sometimes long-standing advice can come and bite you in the butt, literally? You know how your mother always told you to make sure you are wearing clean underwear? Well, you might also want to make sure that if you are going to end up in the hospital, you aren’t wearing clean underwear that is bright yellow and says “I Love Boys” on it. Yeah, that’s all I’m going to say about that…

The rheumatology people were their usual crabby selves. My rheumatologist didn’t come to see me, but a few people from the rheum clinic did. When they came in on Saturday, they basically said that they felt my hospitalization had nothing to do with them.

I thought that was a bit ridiculous. Because in my opinion, I have lupus and rheumatoid arthritis first. Everything else is secondary. I never had anything happen to me like either of my hospitalizations before I became chronically ill, so to me, this has everything to do with them.

The rheum guy came back on Sunday, and said he heard that I hadn’t been allowed to take my Methotrexate – I was told that because it’s a chemotherapeutic agent, there were only certain doctors who could requisition for it – that whole thing didn’t make a lot of sense, but it was probably better that I didn’t take it. Anyway, in my head I was thinking: Now you care? Now this has something to do with you? Oh well!

I think you can learn a lot from being in the hospital. A few lessons from this latest excursion? It made me realize how much I try and fit into a day or a week. It also made me realize that I much prefer orange Jell-O to raspberry (although any kind of Jell-O tastes like food from the g-ds after being NPO for 34 hours). This is really important knowledge, no? And I think I need to have an “illness” bag packed so I can be prepared if this happens again. You know how pregnant women have a bag packed just in case? I think this probably works well for chronic illness, too, especially since it seems like a few day hospitalization is becoming a annual pilgrimage for me, unfortunately.

So I am, or rather, my illnesses, are a total mood killer. On the other hand, maybe this experience was a litmus test for our relationship. If it was, my BF passed with flying colors. He was pretty amazing.

He spent the entire night with me in the ER, after having gotten very little sleep the night before. He was really calm, which is what I needed, especially when it looked like I’d be having surgery very soon. He also brought me some clothes, a coat to wear out of the hospital since I hadn’t brought one with me, and he even snuck in some food for me when I was no longer NPO. He did this all of his own accord. And he used some of his connections to make sure that I was taken care of.

Aside from my immediate family, I’ve never had anyone take care of me like he did. What would I do without a doctor in the house? My boyfriend, the doctor, that is! I know I screwed up date night. I guess I’ll just have to make it up to him.

(And I am relieved to be going back to my normal role as a patient, the one who takes a bunch of pills and doesn’t always feel good, rather than the one that is confined to a hospital bed)

(And I still may need surgery, but I have to wait to get in to see my GI doc in a few weeks)

(And kudos to my mom for being awesome and helping me navigate the world of adult diapers made for someone the size of a baby elephant)

Add Another One To The List

There’s always something, isn’t there?

It’s the holiday season, and lupus and rheumatoid arthritis are the gifts that keep on giving…

I had my six-month rheumatologist appointment on Friday.

The more that I think about it, I’ve had pretty constant disease activity since I was in the hospital, and maybe even before. And this isn’t shocking, considering that the hospital is a pretty horrible place to try and survive in, even if you’re not dying. No sleep, crappy food (if you even feel like eating), and being constantly poked, prodded, and questioned by strangers. The hospital is the ultimate lack of control.

For instance, I can’t quite forget when a hot, male orderly came into my room, asking if I had paged the nurse. I reluctantly told him that I had to use the bathroom. He asked if I could get up and walk to the bathroom or if I preferred a bedside commode. I opted for the bedside commode because I was in no condition to walk anywhere at that point. I remember thinking, nothing makes you feel eighty years old like a bedside commode… (Obviously, my mind must always be on “thinking of good lines for blogging” mode)

Anyway, my doctor was so charming, he squirreled me into getting the H1N1 vaccine. I said I wouldn’t do it. I said I would refuse. But he offered up, unprompted, “I got it. And I made my wife and daughter get it” (I didn’t know he had a wife and daughter - maybe he just made them up to butter me up). I was tempted to say, “Well, they don’t have whacked out immune systems.” But I didn’t. I made the decision to get the shot. And I’m not suggesting that anyone with similar illnesses get it. I think it’s a personal decision. My reporting this is just that. I’m not advocating one way or another, although I know there are many people out there who have very strong opinions on both sides of the issue. I found myself looking and feeling my arm, making sure that it didn’t look weird, or hurt more than I thought it should. I kept the injection site covered with a band-aid for several days. All seems to be fine so far…

So I am officially off of CellCept. But I am starting Methotrexate (MTX) next week. I have avoided MTX and am not thrilled about this change. But…

Based on the symptoms I am having, my rheumatologist and I agreed that the CellCept seems to have plateaued – when I had to be off of the CellCept for two weeks during and after the “pneumovax debacle,” I didn’t know if I’d be able to function without the CellCept, but I was fine – and that the rheumatoid arthritis has taken the “upper hand.” My right hip is a daily pain, and my elbows are painful, swollen, and don’t fully extend anymore, without great pain and effort. This was a symptom I was having when I first started seeing my rheum. Reverting back isn’t a comforting feeling.

I’m starting on oral MTX, which only has to be taken once a week. My doctor seemed jazzed about the shot form. But I protested. This is the one thing I’ve been trying to avoid all along. I just don’t think I can inject myself. And there has to be a point where I put my foot down, and say, “I just won’t do that.” My doctor thought it was kind of funny that the mere thought of giving myself a shot made me nervous, given everything I’ve been through. But ultimately, he conceded. He said that if I don’t do well with the oral form, we will try the shot, and we will try and coordinate with the student health center so I can be given the shot once a week and won’t have to do it myself. Not so sure I really want to trust the student health center with shooting me up with anything, but at least the guy is trying…

Plus, given my more than occasional blue lips and fingernails, my rheum confirmed that it looks like I’ve acquired a secondary condition to both lupus and rheumatoid arthritis: Raynaud’s (phenomenon). Fabulous. Just add another one to the list.

It’s funny because the nurse who met with me to go over MTX said, “If you have a fever of 100 or more, and there is any sign of infection, you have to stop taking the medication and call us immediately.” Then she said, “But you know, a sniffle is not an infection.” And I’m thinking to myself, you just told me to be hyper vigilant, and now you’re telling me not to overreact. Makes total sense.

A lot happened at this appointment. But I feel oddly okay with both of the decisions I made. My doctor was cracking jokes. His demeanor was so much different than my very first appointment with him in January 2008. There was a point in time when I considered switching doctors. But this appointment put me at ease. I asked if MTX was truly the best option at this point. He said yes. And given that we haven’t tried everything yet, I feel like I have to try things at least once. And, in some ways, I’m happy to be trying a new med because we’ve kept things status quo for a while, without seeing any marked improvement. Plus, we I think we’ve been fairly liberal in terms of treatment to this point. My rheum even thinks that some of my recent gastrointestinal issues may be a result of having been on the CellCept for as long as I was. So despite all of the bad things I’ve heard about MTX, I have to be positive and think that it will hopefully work for me and that change is a good thing…

More than anything, I’m amazed at how far the relationship with my doctor has come. And I appreciate that we both took the time and effort to feel each other out and get to know each other, over the last almost two years. I feel at ease with my decisions because I felt comfortable asking the important questions, and my doctor openly and willingly answered them.

I’m not sure whether it was the holiday spirit, eggnog, or something else that put a spring in my doctor’s step, but whatever it was, I liked it.

I’m sure I’ll have plenty of updates once I’ve started MTX, and I’m a bit relieved that I’ll be at my parents’ when I start it. So, for now, I’m off…

Happy holidays, everyone! Catch you in 2010!

Adventures In The ER And The MPU (Medical Procedures Unit)

Wow, time has really gotten away from me. I can’t believe that it has been over two weeks since I last posted. There has been a lot of personal stuff going on, plus some unexpected health issues.

On Friday, I played the role of the dutiful patient and got a pneumonia shot as my rheumatologist suggested. When the nurse swabbed my arm, I noted that she had swabbed in a weird place, and she responded by telling me that the pneumonia vaccine is NOT injected into the muscle. Okay, I’m supposed to trust these people, right?

I started feeling a bit off Friday night, having chills and feeling achy. Saturday morning I woke up with a silver dollar sized welt on my arm around the site of the shot. My arm was really hurting, but I figured it would get better.

I called the doctor on call at the student health center Sunday morning after I woke up to a fist sized welt, rather than a silver dollar sized welt. I was told that this was probably a normal reaction, but I could come in Monday morning if I was still concerned.

Thanks to my good friend, Maria, for the suggestion, I called the rheumatologist on call at the hospital where my rheum is. I received a call back telling me that it sounded like I had an infection and I needed to get myself to the ER.

I went to the ER with the assumption that I would be given some oral antibiotics and be sent home. Unfortunately, this did not happen. My arm worsened, so after spending 24 hours in the ER, I was admitted to the hospital. The doctors suspect cellulitis, an infection of the tissue, possibly combined with a possible allergic/autoimmune reaction.

It’s difficult to determine if someone who doesn’t have my health issues and isn’t immunosuppressed would have had the same reaction. But regardless of this, it is clear that the vaccine was administered incorrectly – it was not injected into the muscle - and landed me in the hospital for three days.

I had to be taken off the CellCept, and have to stay off of it until I’m through with the 10-day course of oral antibiotics I was sent home with. I am a bit concerned about the side effects I might have once I start back on it again, but there was some concern that the CellCept was worsening the infection.

*****

Despite all of the craziness, I was told to go ahead with the previously scheduled endoscopy and colonoscopy. So after getting out of the hospital Tuesday night, I was back in as an outpatient on Wednesday.

I was pretty nervous about this. I did have some discomfort during the colonoscopy, but slept right through the endoscopy. The doctor did a bunch of biopsies, so hopefully I will know the results next week.

Definitely the worst part of this adventure, in the Medical Procedures Unit, was the preparation. You know, there is some shit in my life that needs to be liquefied, but my literal shit, not so much. I think a great Saturday Night Live skit would be a boy band singing a song called “Liquefy my shit”…Okay, you get the point…

*****

Amazingly after all of this, I saw my PCP for the first time this morning and have been cleared to go on my trip to New York tomorrow. I’m really happy about this as I am in much need of a vacation.

Mainly I’m recounting all of this so that you all know where I’ve been. I know there are a lot of curious people. I left the personal stuff out of here and focused on the health stuff. But suffice it to say that the last few weeks have been crazy.

Lessons learned over the past few days:

- Follow my instincts. If I think something is wrong, it probably is.

- During the bad times, your “people” are weeded out. It came through loud and clear who my people are. And I am so grateful to them.

- Lupus isn’t small beans. Neither is being immunosuppressed.

- The body needs rest. I guess my body needed to freak out and I needed to land in the hospital and do absolutely nothing for three days to realize this.

In the end, I think that my sense of humor is intact, although my appreciation for vaccines has decreased significantly. While, I’d like to say that I’m no worse for the wear, I kind of am…

This is a picture of my arm on Sunday morning. It got about twice as bad by the time I dragged myself to the ER.

This is a picture of my right arm – the left arm was the infected one – post blood draws and IVs.

Worst Case Scenario...Maybe Not...

Yesterday I had an appointment with a new doctor. I believe we are on Dr. H at this point, although I honestly don’t remember anymore… So Dr. H it is…

Dr. H is an uber-specialist. What do I mean by that? She comes highly recommended. I’ve only ever heard good things, and she is nearly impossible to see. It was Dr. C, my rheumatologist, who got me an appointment with her.

Dr. H is a gastroenterologist. I started seeing Dr. D (when I first got sick), also a gastroenterologist, but he was a liver specialist (and it turned out my liver was fine), and Dr. H is known for all things related to the stomach/intestines.

I’ve been having various gastrointestinal issues for a while now. Some that I’ve tried to ignore, some that have gotten progressively worse. It appears that the main concern, as it often seems to be, is that one autoimmune disease tends to bring others with it. So given my history, there is the potential of something autoimmune going on beyond lupus and rheumatoid arthritis, related to the gastrointestinal area.

In the back of my mind, for me, the worst case scenario regarding this appointment would be being sent for a colonoscopy. And, well, that’s exactly what I got.

Now I know, in the grand scheme of things, this is a simple outpatient procedure. Drinking some gross stuff, mild sedation, and two to three hours of my life. That’s it. Easy-peasy.

But I don’t know…

As the woman at the check-out desk attempts to schedule me for the endoscopy and colonoscopy, the power goes out (seriously – I swear, I couldn’t make this stuff up if I tried).

Is that a sign that I should run away with my innards still intact and unexplored?

In the end, I don’t run. I sit there, on pins and needles, thinking how ironic it all is. The nurse is being super nice to me because she knows the procedure she’s about to schedule me for is usually reserved for people at least twice my age.

And it’s ironic that it’s the age factor that bothers me the most, and not the fact that someone’s going to stick a camera up my ass…

The good thing is that Dr. H seems super nice, and she will be the one to do the procedures. In many ways, it seems like this is the most prudent thing to do. But I’d be lying if I said I wasn’t nervous and apprehensive about this, because I am.

The whole lack of control thing definitely comes into play here. As the education nurse reviewed all of the paper work and information about the procedures with me, I laughed to myself at the fact that it says you shouldn’t try to walk home from the hospital after a colonoscopy (go figure!).

But that would be me. I’d probably try to walk home from the hospital just to prove that it can be done. But alas, they won’t start the procedure if your designated driver/responsible adult isn’t present and they won’t let you leave without them, either.

So there it is. This is going to be good. It’s going to be great. Well, maybe it’s just going to be fine…

Why I’m Not Singing The Praises Of Benlysta

I’ve gotten e-mails from multiple e-mail groups, listserves, and organizations about Benlysta. Other lupus bloggers are posting about it. Clearly there is buzz about this new drug, but I’m just not feeling it.

Maybe some of you are thinking, this is just her depression talking. Or this is her sullen personality showing itself once again.

No, actually, this is me being realistic.

Recently, I got a very fancy envelope in the mail from the rheumatology clinic. I wondered what it was, and was a little more than surprised to see staring at me a flyer for a lupus walk.

I wanted to scan the flyer in to share here, but I refuse to advertise. And I don’t appreciate having things rubbed (or thrown) in my face. This whole “direct-to-consumer” marketing has gotten a little out of hand. Don’t tell me what kind of patient I’m supposed to be…

As I’ve read some of the things that doctors are saying about Benlysta, I’m not very encouraged. It sort of reminds me of how, in 1985, right after pituitary-derived growth hormone was taken off the market because people were dying, Genentech was conveniently prepared six months later to unveil a synthetic version (and I’m not sure that has been any better, for other reasons not to be explicated here).

I think doctors, pharmaceutical companies, everyone is feeling the drain that there hasn’t been a new drug explicitly to treat lupus in over 50 years. Is this fortuitous timing? I think so. Could this be the cure? Maybe, but I think not.

I’m particularly skeptical when the company running the study of the drug refuses to release drop-out rates, and there are no negative side-effects/ incidents being reported in the news.

I think drug companies are crafty. They know how to find potential markets and exploit them. Human Genome Sciences stock soaring 277% after the news about the efficacy of drug was released is a case in point (washingtonpost.com). Honestly, at this moment, I feel like this drug is being promoted as a moneymaking scheme for big-pharma, rather than a humanitarian effort on the part of doctors and scientists to actually help patients with an incurable and often debilitating disease.

Lupus patients have been taking drugs with horrendous side-effects for years (read: methotrexate) because we’ve had no other choice. So really, there’s no great marketing reason to create a drug that’s both safe and affective. It kind of makes me feel like these companies think lupus patients are desperate, they’ll take anything. It’s also curious that nearly everything I’ve read has been the exact same thing; copy and pasted from various press releases. The only newsworthy thing about this is that it’s new.

I also find it more than a little ironic that the LFA has a link on their website, “Send Words of Appreciation to those who helped to develop BENLYSTA™ as a treatment for lupus.” You’ve got to be freaking kidding me. The drug hasn’t even gone through the final stages of trial, FDA approval is years away, we clearly haven’t heard the full negative story about this drug, and yet were getting all warm and fuzzy and shit? We’re trying to feed the medical profession’s ego. Again, I have to wonder if this is meant more to help doctors or patients. And when that answer can’t be easily parsed out, we’re in trouble.

The other thing I have to say that I find humorous is that this drug is being touted as a way to get patients off of steroids. Okay, so we all know the horror that is prednisone. But here they are, promoting this new, injectable, safe or not (we don’t know yet) drug. And the best they can offer is don’t take that, take this instead? It’s a classic fake-out, and right now, I’m not buying it.

I guess I’m also a little biased because since I’ve been feeling pretty good recently, I’m of the mind, “If it ain’t broke, don’t fix it.” And I’m sure I’ll get some hate mail about this post, but I think we need not get too ahead of ourselves here. And I don’t know about you all, but I’m not too keen on the idea of donating my body to science just yet.

Obviously I’m as jazzed as the next person with lupus that we now know that scientists are actively studying this disease. But just as people tell you not to marry the first person you meet, I don’t think we should be committing ourselves to the very first drug, either.

Reality Sets In And The Odds Are Overwhelming

The reality of illness is hard to deal with. Time and again, there is something that will happen that sets off a cycle of crazy thoughts, thoughts that make illness real for me in a way that shouldn’t necessarily matter at this point.

Lab Work

My doctor e-mailed me on Friday to say that all of my tests came back within the normal range. So “we” proceed with “low dose” prednisone on flare days, and see how that works, along with my current medication regimen. You know, normal lab results should put me over the moon. But the truth is, it’s a mixed blessing – normal lab results, but still not feeling great – what’s going on?

So here’s a question. Do regular lab results mean remission? I mean, forgive me for being naïve, but I thought remission would come with bells and whistles, or a celebration of some sort. Like I’d shake my rheumatologist’s hand, maybe even give him a hug for doing such a good job, and I’d walk out the door, never to be seen or heard from in the rheumatology clinic ever again. I know remission doesn’t mean “cured,” but I thought it at least meant so little disease activity that you don’t even know you’re sick – not normal lab results, but still feeling like shit. I guess I’m living in a fantasy world of my own making. But I guess that could be said for a lot of things in my life these days…

I’ve become very visual lately. I need drawings, schematics. I need to see it to believe it! So I’ve created this table. There are four possible combinations when it comes to the way one feels and the corresponding lab results.

I think it’s pretty self-explanatory. And I think it’s totally true.

Medication

I’m pretty faithful when it comes to taking my medication, but recently I’ve started to feel overwhelmed. All four of my daily medications came up for refill at the same time, plus the addition of prednisone. So I got five prescriptions filled all at once, several of which had changed dosage or companies (Cellcept is now available as a generic, which makes my wallet happy). So as I filled in my weekly medication thingy, I felt overwhelmed for the first time in a while. Which pill is this? How many of this pill do I need to take? But the truth is, this should not overwhelm me. I’ve been adding and subtracting meds since the very beginning. But now with the daily count at eight different medications, it’s a little daunting.

And to my chagrin, as recent events have proven, prednisone, for all of its many, many flaws, really does work. I was pretty much able to recover from my most recent flare in about four hours, which is a vast improvement from four days. I do seriously hope, though, that it does not become an everyday thing, because with everything going on in my life right now, I can’t really afford the food cravings, cystic acne, moon face, and generalized bitchiness that comes with the territory.

Plus, I’m pretty sure that from the combination of spending several hours at the hospital on Wednesday, and several rides on the city bus on both Wednesday and Thursday, I’ve managed to pick up some kind of cough/cold/throat thing. Hopefully it won’t last too long, although it seems to be getting worse by the minute, which probably means an impromptu trip to the doctor. But with a whacked out immune system, so it goes…

Support Group

This illness stuff can be confusing and draining, and sometimes, we need others to help us deal. While I have found blogging to be incredibly helpful, I definitely think there is something to be said for a little old-fashioned, in-person communication. I recently found out about a support group that meets once a month around a 15-minute drive from where I live. Since I don’t drive, getting there was an adventure for me (but that’s a whole other story).

When I was feeling better, the thought of a support group wasn’t as daunting. I felt I’d be able to handle it better emotionally, maybe because I do tend to have lots of emotional ups and downs when I’m flaring. I didn’t want to have that “deer in the headlights” look that I did when I went to my first rheumatologist appointment. I guess as far as illness in concerned, I have come to associate any new experiences with fear and dread.

I contemplated not going to the support group – only a select few others and I would have known my failure to “woman up.” I was fully prepared to chicken out. Going to a support group, meeting other people with lupus, in the flesh, makes everything real – maybe even a little too real. To go to a support group and admit that I have this illness (and others), and that I need support, was something that I really didn’t feel prepared to do. So I bribed myself with a trip to the mall (which was on the way) beforehand, and I bit the bullet.

Ultimately, while I was scared and uncomfortable at first, it was incredibly valuable. I was worried that I would be the youngest one there, as I usually am in the waiting room of the rheumatology clinic. But there was a fairly good spread despite the small crowd; a 15-year old and her mom, a 20/30-something and her boyfriend, me, a 30-something, and a 50/60 year old – all female sufferers.

We swapped war stories about blood draws gone bad and prednisone craziness. It didn’t feel like a competition, and it didn’t feel like a pity party, either. It felt like a safe space to share and learn. And it’s something that I really needed to do for myself, and I would recommend it to others, if you can find a support group in your area.

Owning up to illness is not an easy thing to do, especially in the presence of people who know exactly what you’re going through. It’s easy to tell half stories and sugarcoat things for people who don’t have a clue. And because they don’t have a clue, you don’t have to feel beholden to heed their advice. But when people who have lupus give you advice, they know what they’re talking about…

*****

All of this is to say that being chronically ill calls for constant management and surveillance. With this latest edition of prednisone, I’m really being put in the driver’s seat. And if it seems to work to combat flares, I really have to make a concentrated effort to take it on the bad days, even if I don’t really want to.

And sometimes I have to put productivity aside in favor of catching up on rest. I pretty much was non-stop on Friday, so in reality, the fact that I flared Saturday should not have been such a shocker to me. And the truth is, if I don’t do the best I can to manage things, I’m going to be sick the majority of the time, and that’s no fun for anyone involved.

*****

Also, I feel like I have to give a shout out to all of my wonderful readers. There are many of you now, and I feel very lucky and humble to have so many people who keep up with my blog. With teaching my own class and flaring (that’s a loaded combination right there), I haven’t been posting as much as I used to, but you have continued to read, despite my absence. And there are so many comments coming in lately that it’s hard for me to keep up. I’m not complaining. I love it. Keep it coming! And thanks for letting me share my journey with you!

Let’s “Talk About It, Talk About It, Talk About It, Talk About It”

“Won’t you take me to Funkytown?”

Well, that’s pretty much the way I felt about this latest rheumatologist appointment, which happened yesterday. I’ve pretty much been dreading it for the past six months. At my last appointment in November, things did not go well (see my post “It’s A Numbers Game”). I was not in a good place at the time, and Doctor C appeared wholly unsympathetic to me.

Things have cropped up during this hiatus that I’ve tried to ignore, because I promised myself that since Doctor C was cutting me loose for six months, I’d do everything in my power to keep it that way. Plus, there are some downward awkward conversations I knew were going to be had; conversations that I don’t really ever want to have with anyone, let alone my rheum.

I went into this appointment thinking that I was either going to fire Doctor C or he was going to fire me. And that didn’t happen. But the truth is, I think I might get fired next time if I don’t hold up my end of the bargain. I pretty much can’t slow down until I’ve reached PhD candidacy. But that means that once I’ve passed my first prelim (fingers crossed) at the end of August, I will need to start putting myself first. How many times have I made that promise (and broken it)?

So let’s talk about symptoms. First, new; photosensitivity and mouth sores. Second, returning/worsening; dry mouth and eyes (I might as well embody what it means to be a “dead fish” in the relationship; put in a nicer way, “a fish out of water”), right hip pain and stiffness, dizzy spells, lack of appetite, and severe pain episodes.

But the truth is, while this may seem like a laundry list of symptoms, which it basically is, that’s not the point. The point is that these illnesses have become a liability, a quality of life issue. And that’s what I need to tackle at this point. It’s not so much that these individual things are so troublesome, but the fact that taken together, they are really putting a crimp in my life.

I’m trying to live the fun, exciting, carefree life that a 23-year-old should be living, but lupus and rheumatoid arthritis are making that pretty difficult right now. And that’s what I want Doctor C to understand. I’m having a hard time navigating the awkward conversations that I need to have, and I worry that if I don’t learn how to have them, I’ll become reclusive (or worse).

In the past, it has been about, simply put, keeping me functioning. It has been about reducing pain. But being away from my rheum for six months, it has become more than that. It’s about wanting to be able to live my life. Last year I was really unhappy because I felt bad nearly all the time. But this year has been a test of my physical and emotional wit. I will feel pretty good for a few weeks, and then I’ll flare violently for a few days, sometimes for reasons known to me, sometimes not. This usually spirals and sends me into a depression. Then I move on, and the cycle repeats itself.

Does Doctor C want to hear that in two years, I’ve only had two really good, nearly pain free, practically illness free weekends that I can remember? The first was my sister’s Bat Mitzvah last October. I had just entered the sick world, and it was the last time my family was all together and happy, and I wasn’t “really” sick. The second was more recent. Memorial Day 2009. And does Doctor C want to know that I wish everyday could be a throwback to that weekend? For some obvious and not so obvious reasons…

But see, these are the things that I never utter in my appointment that I wish he could know. I mean, don’t get me wrong, five days of happiness is a lot better than none. But really? Five days out of 730? That’s exactly 1%. I really hope, I have to believe that we can do better than that.

(And okay, so I’m sure there’ve been a few other good days here and there, but when I was pouring over them in my brain, that’s all I could come up with…)

I’ve had an interesting (read: strained) relationship with my rheum. But what I think it comes down to is something I’ve been struggling with a lot of people in my life lately. I don’t want a hero who is going to pick me up and carry me through life. I want someone who’s going to be there in good times and bad times, and who is going to be there to help me through the hurt, not try and spare me the hurt altogether. Because inevitably, the hero is going to trip, fall, and drop me on my ass, or more likely, my bad hip. And that does no one any good.

I guess what I’m trying to say is that I would put Doctor C in the “hero complex” category. Doctor C wants to be able to fix everything, and he can’t do that, and I know he can’t, and he knows he can’t. And as much as I would love my pre-lupus/RA life back, that’s not going to happen. So now I have to live the best I can with what I have. And I feel like in the impersonality of the rheum clinic, that gets lost a lot of the time.

But of course, there’s always the comical occurrence that happens when I’m at a rheum appointment. So, my right hip has been giving me a lot of problems. So Doctor C says he’s going to take a look. And he starts pressing on it, and when I hit the ceiling in pain he says, “Yep, you’ve got arthritis in your hip.” And I’m thinking, I could have told him that. Really, 10 plus years of med school for that? Thanks doc, really, thank you.

So again, nothing changes, except prednisone is back in the picture (and if you missed that chapter, there are many anti-prednisone posts to pick from; and I feel like I’ve finally gotten my body back in shape from the first prednisone debacle, but that’s a whole other story entirely). That’s right, the “p” word, but only on the bad pain days. We’ll see what happens… I do understand Doctor C’s point of view. More medications mean more side effects. More side effects mean, well, we all know what that means. And the words leave of absence were uttered again by my rheum. But I’ve explained to him and the readers of this blog more times than I can count why that isn’t a possibility, at least not right now.

So, I’ve been cut loose for another six months. But I won’t be stubborn and pigheaded this time. I won’t pretend that I can hold everything together on my own. And I can’t operate full speed ahead anymore – and I’ve known this for a while – but I have to own up to it now.

And because we all need a little comic relief once in awhile, movies that have “rheum” in the title…because I’ve been obsessing over this for a while now…don’t know why:

“A Rheum with a View”
“Boiler Rhuem”
“Breathing Rheum”
“Mad Rheum”
“Music From Another Rheum”
“Panic Rheum”
“The Rheum”

It’s a little scary that all these titles sound foreboding. This list is not scientific or exhaustive, so if you have any others, throw them at me!