When Health Is The Focus Again

It’s been a while. Mainly because my health hasn’t been the center of everything. It’s so easy to write when things aren’t going well. It’s harder to write when they are.

In the last two years, I bought a house and got married. And of course, lupus and rheumatoid arthritis have been there and figured in. We bought a ranch because I didn’t want to be forced to navigate stairs if my health declines. A lot of what went in to planning our wedding was done with chronic illness in mind. But even so, those events were at the center.

Now, due to circumstances beyond my control, my health is front and center again. Several months ago, I found out that Quinacrine was no longer available – more about that in another post. As a result of this, my rheumatologist suggested that I go back on Plaquenil. I had been on it before, with my previous rheumatologist, with little success. I told my current doctor that, and he wasn’t convinced. Even when I told him that I had been taken off of it due to elevated liver enzymes, he told me that was incredibly rare with Plaquenil.

So I played the game. I started taking Plaquenil again, just to prove a point. And prove a point, I did. Pretty much every side effect that comes with Plaquenil, I had. I had headaches, extreme nausea, and severe itching. I switched to taking the medication at night instead of the morning and that helped with the headaches and nausea, but I continued to have extreme itching all over my body.    

When I told my doctor my symptoms, he told me that I must have an intolerance to Plaquenil and that I should stop taking it. He didn’t offer any other options. Well, other than telling me that I could make a killing if I could find a way to manufacture Quinacrine myself.

And with this situation, I feel like nothing has changed in the 12 years that I have been sick. Because of my “overlap syndrome” of lupus and RA, many treatments aren’t an option for me. Methotrexate didn’t work and caused elevated liver enzymes and low white blood cell count. Cellcept and Tacrolimus were no good either, for various reasons. Humira caused me to go into the worst lupus flare I’ve ever experienced and so that means that typical biologics for RA are basically off the table for me.

So for now, I’m on Imuran and that’s basically it, at least until I want to get pregnant. And then the jury is out because my rheumatologist and gynecologist disagree on whether I can remain on Imuran during pregnancy. More than likely, I’ll have to give it up, too.

And then where will I be? The ultimate test. How will I be on nothing at all? Will I be able to function?

It’s beyond frustrating.

And right now, I don’t feel great. My labs don’t look great. It all feels like a crapshoot. There are no clear answers or easy decisions. There’s just better or worse.

My old rheumatologist used to measure progress based on whether I was having more good days than bad days. For most of the time I saw him, I was having more bad days than good. But things got better. And I’ve maintained that. Going off of Quinacrine and back on Plaquenil changed things. Suddenly, I was having more bad days than good.

So for now, I wait. Wait for solutions and treatments that don’t exist, wait until the answers become clear to me.

CVS Pharmacy, We Have A Problem

Dear CVS,

I recently had a very frustrating and disconcerting experience at the pharmacy at store #8106.

On Sunday, I called in three prescriptions for refill.  When my mom went and picked them up on Monday, there were only two.  I assumed that I must have accidentally forgotten to call the third one in, so on Monday night, I called in the missing prescription (again!). On Tuesday, when I went to pick it up, I was told there was nothing ready for me. 

I was then told that my insurance was refusing to cover it and that is why it hadn’t been filled.   I agreed to pay for it out-of-pocket because as of Tuesday, I was out of the medication. 

Then, I was told that they would not be able to fill it right away and I would have to come back two and a half hours later. 

I left CVS and called my insurance company asking for an explanation as to why they wouldn’t cover it.  Because it had been covered the month before by a lesser insurance, they decided to give me an override and will cover the medication for a year.  They called the pharmacy and informed them of that.  I thought that’s where the problem ended.  But I was wrong.    

When I went back to CVS, they went to get the prescription for me and they couldn’t find it.  They knew they had filled it.  After 10 minutes, they finally decided to fill it (again!).  And imagine, this only took about five minutes, so it is unclear to me why it took them over two hours to do the same thing the first time. 

As I’ve continued to stew about the incident and the incompetence of the staff, I have come upon a greater concern.  Did someone else end up with my medication?  Has a violation of HIPAA occurred?  The prescription that they claim to have filled was not found while I was in the store, and it’s unclear whether it was found at all. 

I have experienced nothing but problems with this particular pharmacy and its staff.  Right now, I know I will be pulling my prescriptions from this location and am still trying to decided whether I will take my prescriptions to another CVS equidistant to my house, or will take them to a different pharmacy altogether.

Rarely have I experienced such incompetence at a pharmacy, and I am chronically ill, so I have had a lot of experience with pharmacies.  And never before have I been concerned that my protected health information has been compromised.  This is totally unacceptable. 

I want CVS to launch a full investigation into this matter, and I need to know exactly what happened to the prescription that was supposedly filled and then went missing. 

Sincerely,

Leslie Rott

On Building Playgrounds And Baking 1,000 Cupcakes

I recently saw an Orencia commercial (see end of post to watch commercial) that stopped me in my tracks because it is so different from other RA medication commercials. 

The commercial portrays a woman doing everyday things, like turning a doorknob and walking up stairs. 

And I have to wonder.  Is pharma starting to listen to us?

I can’t tell you how many times I’ve sat in meetings with pharma and the continual  trope from me and other patients is that the commercials don’t represent us and portray the disease in a way that makes the general public not understand the significance of the disease. 

One thing I don’t know is whether the people featured in the commercial actually have RA.  Many pharma companies say they cannot use real patients.  However, Gilenya, a drug that treats multiple sclerosis has done just that and features real patients who are on the medication, including my Stanford Medicine X friend Jamia.

This is definitely a step in the right direction.  This is the sea change that we need.  And it proves that if we raise our voices loud enough and we complain often enough, and we speak as a collective voice, we can get things done.  Change is possible. 

And maybe this seems like a really basic or obvious change.  But I think on the part of pharma, they don’t see it that way.  They have fundamentally changed how they talk about RA and what their medications are realistically able to do.

The commercials out there that show patients building playgrounds also create unrealistic expectations on the part of patients.  And this perpetuates the discourse that patients fail medications, when it reality, medications fail patients.  By showing situations that the majority of patients won’t be able to do on a good day not only makes patients expect that, that is how the medication will work for them, but that when they don’t experience it, that they have failed in some way because it should work for them the way the commercial shows.

I won’t call out here the specific medication whose commercials seemed to offend more than others, because you probably know which one I am talking about.  But I’ve always resented them.  I always wanted to throw my TV out the window when the commercials came on and someone was building a playground or baking 1,000 cupcakes, things that I probably wouldn’t have done pre-RA.  The commercials always left a bad taste in my mouth and felt like false advertising. 

Maybe there’s some bitterness that the medication didn’t work for me and my experience with it was pretty dismal.  But I wasn’t the only one.  And that has bothered me a lot, too.  When patients are traumatized by painful auto injectors, and patients have trouble accessing pre-filled syringes, which still burn, but not as bad as the auto injector, someone should be listening to that, and finding a way to change it.

So maybe this goes beyond commercials.  It speaks to patients having a voice when it comes to the medications that are on the market to treat us, and even medications before they even come to market.  It speaks to patient centricity, and what that means and doesn’t.  Patient centricity means involving patients from go.  It means bringing them into the conversation and keeping them around long enough to make it matter.  It doesn’t mean bringing just a few patients into the fold.  It means actually hiring patients to work for pharma. 

Just because you can’t build a playground or bake 1,000 cupcakes, doesn’t mean that you don’t have a voice.  Every patient matters, regardless of illness severity, and whether medications work for you or not.  Sometimes opening a jar or a door, of climbing a few stairs, is the best we can do.  If medications promise more than that, then that is what they should deliver.  We all have to be realistic.  Granted, climbing stairs and opening jars isn’t sexy, but that’s the reality for so many of us with RA.  

Am I Medication Dependent?

A few weeks ago, I forgot to take my meds.  Well, more accurately, I accidentally took my evening meds in the morning, which meant I couldn’t take my morning meds that I missed.  No harm, no foul, right? 

WRONG! 

The next day, before and after taking my morning meds, I felt awful.  I was in pain all over and felt nauseous and dizzy.  I stayed in bed all day.  It was really terrible.  I felt like I was going into a flare. 

And I had a frightening realization for the first time ever.

I am medication dependent. 

I can barely go one day without meds without feeling terrible.  Seriously?  So when I saw my rheumatologist recently, I mentioned to her what had happened and she basically agreed that, that means the meds aren’t working as good as they should be.  This is really frustrating.

The goal is for me to be stable, but one day of missed meds and feeling awful means the opposite of stable.

I’ve also learned that I can’t take my morning meds much later than 11:30 a.m., or I will feel bad all day.  So there is a very small window in which taking my daytime meds actually works.  I have a similar issue with nighttime meds in that I can’t take them much beyond 1 a.m., but the difference is that my nighttime meds are more for helping me sleep and less about treating my lupus and RA. 

After discussing these issues, my rheum talked about clinical remission and how it is still possible for me.  I am not convinced.  How can I go barely a day without meds without being incapacitated and believe that remission is a possibility in the near future?

I don’t even like thinking about the term remission because I don’t really know what it means.  I mean, I know what remission is, but it seems like such a lofty goal, a goal I’ve never really considered pursuing before. 

For me, the bigger goal is preparing my crazy wired body for pregnancy sometime in the next several years.  And whether that comes with remission or not is anyone’s guess. 

I very rarely make mistakes in taking or forgetting to take my meds altogether.  But it’s frustrating to know that I don’t even have a day grace period. 

It means I can’t mess up.  It means I have to be perfect all the time.  And I guess that may be one of the reasons that I have always focused on medication above other things, like diet and exercise.  Now that I’m back to really thinking about those other things, it’s even more annoying that I’m medication dependent. 

It’s much easier to take meds when you know they work, or you have the expectation that they will work.  And when you experience the meds not working because you didn’t take them, it’s sobering to realize that your health or lack thereof is totally dependent on meds and your ability to take them.

Do You Keep A Stock Of Meds With You Just In Case?

Now that we no longer live in Manhattan – and hopefully I will fill you all in on the move in a future post – I’ve decided to carry at least one night and one day’s worth of meds with me at all times.

The Blizzard of 2015, which wasn’t quite what we were expecting, also prompted me to make the decision to carry some meds with me at all times.

Having to commute from outside of Manhattan and back means that if there are severe issues with the train or weather, I might not be able to get home.  Because we know people in Manhattan we can stay with if we need to, there is a real possibility that there may be times when we have to do that.

And the main thing that would prevent us from being able to do that – or would at least make it difficult if we didn’t have a choice – is me not having my meds. 

I can’t sleep without my night meds, and if I don’t take my day meds before noon, I won’t feel good.  Yeah, it sucks to be in a situation where I am that dependent on meds, but such is life with lupus and RA, I guess. 

The only time I ever really have extra meds with me is when I’m traveling.  I always bring all my meds with me just in case.  And that seems totally logical. 

But the idea of getting stuck in the City, without my meds, seems kind of ridiculous. 

It’s just another bizarre thing with New York living that makes me realize that I’m not in Michigan anymore.  I’m not a fifteen minute walk home anymore.  I’m not even a fifteen minute drive home anymore. 

The thought of not being able to get home at night feels me with dread.

But what fills me with more dread is not having my meds. 

I guess this is sort of a simple thing, and I’m surprised that I never thought of it before, but I’ve never had to think about it before. 

I’ve always known at the beginning of the day where I will be going at the end of the day, and that place always has had my meds.

This also presupposes that I have enough of a stock of meds to do this in the first place. 

For one day and one night’s worth, I do.  But not much more than that. 

So I’ve taken an old prescription bottle, put in a day’s and a night’s worth of meds in it, and have tucked it away in a pocket of my purse, so it will be there just in case.

Hopefully this will provide me with some peace of mind, especially as we prepare for another major winter storm.    

I guess it goes to show that it’s best to hope for the best and prepare for the worst.   

Sometimes the world outside of illness is just as unpredictable as the world with illness.

Lupus Denial

So I finally bit the bullet and went to see my rheumatologist. 

When I called to make the appointment, they said she had one appointment today or I’d have to wait for over a month.  So circumstance made me face things head on.

And I’ll admit, I was a bit nervous.

Several weeks ago, I noticed a swollen lymph node behind my ear.  A few days ago, it got bigger and became painful.  For those of us who have been on medications for lupus and RA, we know that there is a risk of lymphoma.  So of course, that’s where my mind automatically goes.  Unfortunately.

I’ve also noticed that my immune system is not up to snuff.  I feel like I am constantly about to get sick, but don’t actually ever get sick, which for me is a telltale sign that my immune system is bottoming out.   I’ve also been having a lot of itching and skin legions.     

So the verdict? 

I am having a lupus flare. 

Did I really need a medical professional to tell me this?

No.

Should I have gone to the doctor two weeks ago when I started noticing things were off, or been really proactive and made a preemptive strike a month ago?

Yes.

My rheumatologist is upping my dose of Quinacrine, as I guess I have been on the lowest dose possible until this point.  She also suggested going back on low-dose steroids while we wait for the higher dose of Quinacrine to kick in.  But I’m not feeling that.  If things stay the way they are pain-wise, I’ll deal, despite my tender, achy joints.  Because I finally just got off of the steroids.    

But why can’t I trust my own instincts?  Why, when I knew things were amiss, did I try to ignore them or assume I was being hypersensitive and that I was just imagining all of these things?

Because I’m in lupus denial. 

I don’t think I’ve ever really wanted to admit its primacy in my life.

To me, my RA, while still unpredictable, is at least more predictable than my lupus, at least that is when I can actually tell the two apart.     

I am an empowered patient, but sometimes even empowered patients work against themselves and do stupid things. 

Empowered or not, I have fears and experience denial, just like everyone else dealing with these illnesses. 

Even six years in, I’m not always  prepared for the realities of these illnesses or the things that could come from treating them. 

I can only hope that the increased dose of Quinacrine will calm things down.  I’m certainly hoping that the swollen lymph node resolves itself so that it isn’t there when I see my rheumatologist again in two months.

And I also hope things calm down because in all of my denying what’s happening, I’ve created an insane work and event schedule for myself. 

But as Tim Gunn likes to say, “Make it work.”  I’m going to fake it until I make it, or at least until my illnesses make it impossible.

So yeah, I guess even though I’m admitting I’m in denial, I’m still in denial. 

Wading knee deep in denial (de-Nile).      

(Several years ago, I had a neck x-ray and my rheumatologist in Michigan never told me the results.  So I pulled that out of my medical record and took it to my appointment.  And as it turns out, those results basically explain both my lower back and neck pain and issues.)

My Post-Steroid Life: Stretch Mark Cream And Strap-On Ice Packs

Sounds sexy, right? 

Sometimes RA is so sexy…and soul-crushing.

I’ve been off of steroids for about two months now.  And it has been a struggle.  But I am determined not to go back on them for a long, long time.

Being on steroids is a pain (figuratively).

And being off of steroids is a pain (literally). 

For me, being off of steroids means that I have a significant increase in pain and swelling, especially in my knees and feet.

I haven’t really found a way to deal with the feet pain.  It’s pretty insidious when the bones in your feet hurt. 

For my knee pain, I was really excited to find an ice pack that actually “straps on” with Velcro.  It’s great because I can wear it at night and not worry about it falling off.

Oh, the simple things in life.  Who would have ever thought that an ice pack would be so exciting?    

The other issue I had during this round of steroids, while on Methylprednisolone, which I never had when I was on Prednisone, is that I have stretch marks on my sides and on my under arms just above my armpits. 

Apparently this is something that can happen.  Although, like I say, it has never happened to me before.  It’s also troublesome because I didn’t gain the amount of weight while on steroids that you suspect would cause stretch marks.

They don’t hurt or anything, but they are totally unsightly and embarrassing; luckily they are mostly unseen, although I am constantly aware that they are there. 

I got some stretch mark cream, which seems to be lightening them up a bit, but seems like a product I shouldn’t need at this point in my life.

One thing I do miss about steroids is that they make my shoulders feel so much looser and lighter, like an unbearable weight has been lifted off of them.      

But I obviously don’t miss all of the pesky side effects, and even though I am off of them, I am still trying to get rid of the side effects. 

The whole steroid thing is something that I really struggle with.  Of course I would rather not be in pain than be in pain, if I had a choice.  But sometimes, steroids just feel like more work than they’re worth.

I recently met several women in their 20s who have had to have full hip replacements due to being on chronically high doses of steroids.  This is definitely not worth it to me. 

The prospect of a hip replacement does not thrill me at all.

So I’m going to try and stay off of steroids for as long as I can.  And I’m going to try and complain to a minimal degree while I’m off of them.     

But the reality is, I have seen my body change in myriad ways over the past six years that I have been sick.  And I think it’s a really difficult aspect of being chronically ill that you don’t have control over.  Your body changes – whether from the ravages of the disease, medication side effects, or many other reasons – and you’re helpless to stop it from happening.  You have to sit back and watch it happen.  And so do the people around you. 

When I first got sick, I was so ill, that I would have done anything to get better.  And I have made concessions along the way in terms of telling myself I would never give myself injections to then getting to the point where I did give myself injections.

But I am still on the fence when it comes to steroids.  I’ve made concessions and have gone back on them when I didn’t want to, but they will never be a permanent solution for me.  Finding that permanent solution is something I’m not sure I will ever find.     

Sometimes I feel like when you’re chronically ill, it’s expected that you’ll evolve and not worry about superficial aspects of yourself.  Like if steroids are helping my pain, I shouldn’t be worried or annoyed that I’ve gained weight and feel fat. 

But the truth is, one of the most stunning aspects of being chronically ill is looking in the mirror and not recognizing the person that is staring back at you, whether the lack of recognition is due to literal or figurative changes.

I try to be realistic about my situation.  I try to focus on the positive.  And I try to cut myself some slack when my illnesses or medications change my body.  But sometimes it’s more frustrating than being in (literal) pain.   

A “Bitter Pill”: Weighing In On Our Broken Healthcare System

An article in Time Magazine (titled “Bitter Pill”) recently chronicled the high costs of medication and other hospital services.

For those of us who are chronically ill, we know all too well that the financial costs of healthcare are extremely high, and can add a lot of stress to an already over-taxing situation.  So too are the emotional costs. 

It’s stressful when things don’t go the way you planned.  And I don’t just mean medications working the way they’re supposed to, test results, etc., I mean something as basic as procuring a prescription.  And it’s not just that these experiences are annoying.  They are unnecessary. 

Here’s an example:

When I started a new medication a few months ago, I was told that the prescription had been submitted to the hospital pharmacy where my rheumatologist’s office is.  I went to the pharmacy, and of course, they had no record of the prescription. 

I went up to my rheum’s office and talked to a receptionist.  I was informed that the prescription had been accidentally submitted to the student health center pharmacy, and that my doctor would have to redo the whole thing.

You would have thought I was a drug addict “jonesing for a fix”.  I’m not.  The problem was that there are very specific instructions for lab work that has to occur at certain times and at regular intervals.  To make it easier on myself, I had decided to do the blood work on Tuesdays, as I am already at the hospital to volunteer.  If I wouldn’t have been able to get the medication, I would have had to change my whole plan.

I called the student health center and they confirmed three things I pretty much already knew:

   1)      They could not fill this prescription because they do not stock the medication.

   2)     My insurance would only cover the prescription at a specialty pharmacy, which the student health center is not.

   3)     Because my doctor does not practice at the student health center, they could not have filled the prescription anyway, regardless of numbers 1 and 2 just mentioned.

So why did the system even allow it to get submitted there in the first place?

Ultimately, despite what I had been told, the student health center was able to call the hospital pharmacy and transfer the prescription over.  And I was able to get it that day.  But what started out as a 15-minute errand, turned into a nearly two-hour ordeal.

This directly speaks to the use of technology in the healthcare realm.  For the first time, patients are able to interact with their medical records and health information in truly amazing ways.  However, this technology has its pros and cons.  I talked about this at length in my post, “The Trials And Tribulations Of Electronic Medical Records And E-Prescribing* **”. 

As I suggested in that post, E-Prescribing doesn’t seem to work very well.  If you cannot get all of your prescriptions at one pharmacy, this is not something the system can deal with.  Similarly, the system defaults in ways that can cause the wrong pharmacy to be chosen or the wrong medication, wrong dose, wrong administration, etc. 

This technology makes doctors lazy.  They type stuff in without making sure that what gets submitted is correct.  And that’s what happened in this case. Because UMHS and UHS are very similar, my rheum thought he had selected one, when he had actually selected the other.

Then these things get sent out into the ether, and you only find out if there is a problem when you go to pick up the prescription and it hasn’t been filled for whatever reason.

And then it becomes the patient’s job to slog through the system to find out what went wrong where, and what can be done to fix the problem.

And since some insurance companies require different pharmacies for certain medications, drug interactions are a real concern, especially when the patient deals with four separate pharmacies for their various medications.

If that’s not stressful, I don’t know what is.  It means that the patient – who is often sick, tired, and unable to be a real advocate – really has to be on top of everything. 

On the one hand, you would think that it’s great to be an empowered patient with the technology that is available, but the way the system works has the opposite effect, and in fact, can be very disempowering. 

When obtaining a new prescription is like running a marathon, it’s very easy to want to beg out.  It’s overwhelming.  In some ways, the big things should be stressful, but these little things should not have to happen at all. 

I can’t imagine what it’s like for those who can’t do what I did or don’t have someone to do it for them, to hunker down and wait until the situation is resolved.  Not that I enjoy spending hours going on a wild goose chase, because I absolutely don’t, but I can.  I don’t take no for an answer.

It’s not easy to be chronically ill.  It’s downright stressful.  That’s why these “small” stresses brought upon by the healthcare system are so maddening.  Is it too much to ask for something to go smoothly, just once?  Yes, apparently it is.

Sometimes too much technology is a bad thing.  While, again, I do think that there are definite benefits to patients having so much of a direct connection to their health information, I also think that the system, as it currently stands, relies too much on technology that isn’t designed to deal with the nuances that come with having a chronic illness.   

Technology is supposed to make things easier, and maybe as far as healthcare is concerned, it does in the realm where healing time is quickened, procedures are made less invasive, things like that.  But in the realm that is the doctor, the patient, insurance companies, and the receptionists and pharmacists, it makes things more complicated.

Sometimes I want to scream, “Just give me a damned piece of paper.”  That’s an old-fashioned notion, I know.  But if I, the patient, could take the prescription to the correct pharmacy on the first try, it would certainly make things less stressful.  Or if I had that paper, and three prescriptions need to go to three different pharmacies, I could take care of that – and get it right – on my own. 

I think the most stressful part about this, however, is that in some ways, my life is in the hands of these people, and they don’t get it, they could care less.  The sense of urgency that I feel doesn’t register in their world.  So I take control.  I have to be my own – and best – advocate.  And yet, no matter how I hard I try, I sometimes find myself on the losing end anyway. 

Chronic illness is stressful.  And it would be nice if just once in awhile, one of the many people in the healthcare arena got it.  That they could feel your pain, or sense your frustration, and offer to lighten the load a bit.  But that rarely happens.  Instead, I’m stuck talking to technology that doesn’t respond.  I’m fighting a system that cannot be fought.  And while I appreciate the technological advances, I have seen firsthand, time and time again, the wisdom of a paper prescription that your doctor has to write out and sign.  That you agree to the terms and leave, prescription in hand, feeling empowered, feeling like the master of your dominion. 

Instead, I feel like a lame duck, like I’m stuck in a cycle of ridiculousness.  I leave feeling acutely that I’m chronically ill, knowing that my healthy counterparts deal with the system so much less often, and probably much more smoothly on the occasions that they do.

So my pills are a constant reminder of the struggle I face.  Even though they may be hard to get my hands on, I swallow them dutifully, albeit, even though they leave a bitter taste in my mouth, the remnant of fighting for my health and my life, in a system that seems to serve everyone other than the patient.

  

The Private Struggle Of A Medication Transition

The last two and a half weeks have been hell for me.  They’ve been a blur, really. 

There have been some good moments, but they have been between periods of complete and utter exhaustion, fatigue in which sleep only adds to it. 

My knees have felt like they are made of glass, like they could shatter into a million pieces at any moment.  My sinuses have felt like they were going to jump out of my head.  I have had horrendous heartburn that has kept me up at night.  I’ve felt like I’m constantly coming down with something, like I am about to get sick.  But I know I’m not.  That’s just the immunosuppressant working its magic.

The worst part, though, aside from the fatigue, is the fact that I have felt nauseous and dizzy a good portion of the time.

I just hoped that in whatever way my body was adjusting to this new medication, that it would just do it already, because the last few weeks have been brutal. 

I’ve never had such side effects with a medication that have lasted for so long after I first started taking it.   

When I finally e-mailed my rheumatologist, he told me to stop taking the morning dose and just take the night one instead of both.  I guess I waited so long to be optimistic that things would get better, but then when they didn’t, the answer seemed so simple and obvious that I should have made contact with my rheum sooner.

Basically, I’ve been overmedicated.  So it seems highly unlikely that the situation would have resolved itself without a decrease in dosage.

I don’t want to give up on this medication (Tacrolimus) yet.  I know I haven’t been on it long enough to know if it is truly working.  But I also didn’t think I could survive the next month to month-and-a-half of waiting for it work, if I was going to be so non-functional.

I fell asleep in class the other day.  It has really been a struggle for me to get myself where I needed to go.  The fatigue I’ve been experiencing I haven’t seen the likes of since I first got sick, and literally would wake up, go to class, come home and sleep.  Luckily my schedule is a little bit flexible, however, I don’t like having to forego things because I’m too tired.    

I had my first mandatory labs last week.  Does it make me a bad person to wish that the blood work came back out of whack?  Well, that was before I talked to my rheum and he suggested I lower the dose.  But the reality is that the labs all came back normal.  Freakishly normal.  My liver enzymes have never been so normal.

I feel like such a jerk.  I was so adamant about not going on the Rituxan, I dreaded having to complain to my rheumatologist that I didn’t think I could wait the requisite two months to see if this stuff was going to work. 

But thankfully, it doesn’t look like we are going to have to have that conversation.

You truly don’t realize how bad you feel until you start feeling better.  In one day, I graded thirty papers.  I still don’t feel 100%, but I think I can safely say that I am finally on the upswing.  I accomplished more in one day than I have in the last two weeks combined. 

But the thing that makes it so tough to deal with is that you can’t really talk about it.  As I’ve lamented various things, my boyfriend – who has been amazing throughout this difficult period – has told me, “But you have an excuse.”  But I don’t.  At least I don’t feel like I do. 

How do you explain to people who don’t understand that you’re trying a new medication that is supposed to suppress your overactive immune system, and stop your body from attacking your organs and joints, but you just haven’t been able to tolerate the medication?  So you have been sleeping in spurts of three hours, only to be up for an hour or two, and need another few hours of sleep to recover from the time you’ve been up?  And this is after sleeping at least eight hours at night.

“Normal”, healthy people can’t begin to understand that.  And I’m glad they don’t.  But it’s hard to explain erratic, strange behavior when you simply don’t want to talk about it.  When healthy people can’t imagine being on a medication that has such an effect on your body.  Medication is supposed to help, right?  But what happens when the cure is worse than the disease?  What if you have to go through hell to see the light at the end of the tunnel?  If you haven’t been there, you don’t know, you can’t imagine the lengths you will go to in the name of health. 

But it’s so hard.  All of the medications we try for Lupus and RA – or most chronic illnesses, for that matter – have side effects.  They all have their pros and their cons.  And even when they work, they all take getting used to.  So it’s hard to explain how transitioning off of old meds and onto new ones can honestly be worse than your actual illness.  But how do you explain that to people who don’t know?  How can they possibly begin to understand that until your dose gets regulated and your body gets used to a new medication, that it’s full court press?  That it sometimes takes all the time and effort you have?  That it sucks you dry?  That it literally can all but stop you from functioning? 

I don’t know how to explain that to people who aren’t chronically ill.  And so, I think to make it easier on myself, I don’t.  But it might make things harder for me if I don’t.  So if I have to, I just say that I’ve been sick.  It’s not totally a lie and not totally the truth.  And you don’t get any sympathy from anyone if you explain that you are sick all the time.  They really don’t get that, either.

The last two weeks, I have literally had to scrape myself out of bed and drag myself to where I’ve needed to be.  I can’t really imagine how I would have gone on like that if I hadn’t talked to my rheum, and he suggested that I only take Tacro at night. 

I guess I assumed that since Tacro is used at much lower doses for those with Lupus and RA, as opposed to people that have had organ transplants, that I wouldn’t have as many side effects, either, but I was totally wrong on that front.  And this isn’t intended to me a “poor me” post.  To the contrary, I am grateful that, for the moment, every little step does not take an immense amount of effort, that I can do more than just sleep.  It’s too soon to know if the Tacro is working, but at least for the moment, I can say that it’s not destroying my life, either.  Baby steps…

When you have a chronic illness – especially an invisible one – most of the struggle is only seen by those you are most intimate with.  But the struggle feels visible to us because we live it every minute of every hour of every day.  For us, the struggle is never-ending.  We simply cannot turn our illnesses on and off at will, and neither can we truly anticipate what the effects of a medication may be.