X Marks The Spot: Pain And The Reality Of A Little White Pill

On the Arthritis Foundation website, they have a feature called “Look Up By Body Part,” which allows you to select a body part and see what symptoms are common in that area of the body.

I started looking at it and I realized that for me, the question isn’t what does hurt, but what doesn’t.

It’s creeping in.  And not slowly, I’m afraid.

Increasingly I struggle with hours of morning stiffness, doing and undoing buttons, maneuvering my coat on, and fastening my bra.  My left ankle has been swollen for the last few weeks.  I haven’t really had issues with my ankles before, so this doesn’t make me very happy, to say the least.

I feel like I am becoming my 86-year- old grandmother.  And I mean no disrespect by that at all.  It’s just incredibly frustrating and discouraging to see my body in a constant state of flux, and not always in a good way.

I am trying to play the “I don’t need meds game,” but I think I’m only hurting myself at this point. 

And 5mg of Prednisone is unfortunately doing nothing for me.  I wish it was.  Because I hate being on steroids.  And if 5 mg is doing nothing, that means I will probably have to consider the option of increasing the dose.  And I don’t really want to do that.    

On a good day, “X” marks the spot.  I can easily pinpoint one or a few areas where I am in pain.  On a bad day, I can’t pinpoint the pain.  It’s everywhere.  And it weighs me down.  I feel like I have the weight of the world on my shoulders, and my shoulders feel like they will collapse under the weight of everything.

Sometimes when I get really exhausted, I cry.  Like a four-year-old.  But I’ve come to realize that this isn’t a babyish thing.  It’s frustration.  That I want to keep going, even when my body says stop.  And sometimes fighting against it works better than other times.  But that’s the thing about this body.  When it wants me to stop, it makes me stop.  Pain and exhaustion are hard to fight against.

And Thanksgiving was crazy, in a good way.  We were in New York with my boyfriend’s family.  And his brother got married the day after Thanksgiving.  It was busy.  And I was worried that I would crash.  But I didn’t.  At least not while we were gone.  But just a few hours after getting home, pain and exhaustion hit me.  This isn’t a reflection on the week that we spent away.  Overall it was pretty chill.  We didn’t go to bed super late, and we were able to sleep in.  We didn’t do a ton of strenuous activity. 

It’s just me.  This is my body.  It’s the way it works now.  All activities cost me, whether I want them to or not.  I fared very well overall on this trip.  I think a lot of it had to do with excitement and adrenaline.  I skated through and didn’t really have to think about it.  Even though my boyfriend’s family was very good about checking in with me about how I was feeling. 

This is just the way it is.  I lucked out.  For the time we were away, I felt reasonably well.  And now my body is paying me back.  You get a reprieve and then you suffer the consequences of that reprieve.  This is about checks and balances.  A reprieve isn’t free.  It comes at a cost. 

And I know this.  But I think this is one of the hardest things to accept about illness – that my body has limitations that I just can’t always fight against. 

I woke up this morning feeling pretty bad.  I got up and went back to bed three times.  I didn’t even know if I would have the energy to write this post.  But here I am.

I wish I could say that tomorrow will be great.  It might be, or it might not.  The reality is that I don’t know from day to day, or hour to hour, for that matter, how I am going to feel. 

And I try not to burden other people with this.  I could complain all the time, about every little ache and pain.  And there are certain people in my life who do get the laundry list of things that aren’t working for me.  But I don’t see how complaining serves me or anybody else.  I guess I do vent my frustrations here, and maybe that is akin to complaining.  But I’m not trying to be whiny.  I’m just stating the facts. 

Life is hard.  I have good days, and I have bad days.  It’s a good period when the good days outnumber the bad days, less so when the bad days outnumber the good.  And I’m eagerly awaiting the appointment I have with my rheumatologist in about ten days.  I wasn’t supposed to see him until February, but things seem to be getting worse and not better and we need to figure out what the next step is going to be.

 

Sometimes Love Is Just Love

I’m not in a super awesome place right now health-wise.  Unfortunately, my RA seems to be back with a vengeance.  I’m having a lot of issues physically. 

It’s hard for me to use a knife to cut my food.  My boyfriend and I were out to dinner and I was struggling.  He grabbed the plate and the knife and did what I couldn’t do.  I was mortified.  I’m 27 years old and my boyfriend is cutting my food like I’m a four year old. 

This hasn’t happened since I first got sick.  I was home for the holidays and we were having dinner, I was sitting next to my sister, and she had to cut my food for me. 

Clasping my bra is a struggle.  Sometimes managing to get my coat on takes a ridiculous amount of time and energy.  Buttons of any kind are difficult to do with my somewhat useless fingers. 

And when I lay down, I feel like my bones are crushing in on each other.  Again, I haven’t felt this way since I first got sick. 

Lying down is so painful at times.  And when my boyfriend moves his body closer to mine, I don’t want to sound like I don’t love him, but him being that close physically is painful for me.

I don’t want it to be, but it is. 

And he can tell without me saying anything.  And he tells me he has an idea.  He leaves the room and comes back with two ice packs.  He places one against my back and the other between my knees.

At first I’m hesitant, not just because of the pain, but because of the physical and emotional closeness that ensues. 

It’s hard to struggle so openly in front of the person you love. 

It’s feels vulnerable in a way that nothing else does.

And I’m not good at accepting help. 

As frustrating as some of his quirks can be, in that moment, they don’t matter.   Nothing else matters.

He rubs the ice pack up and down my body.  Not in a sensual way, but in a healing way. 

And it feels like heaven.  Sometimes heat feels good, but when your joints are hot and angry, heat actually hurts. 

As I face the wall, I cry silent tears.  For my pain, for being sick, but most of all, for having this amazing person next to me who I’ll never be able to repay in kind. 

No one has ever done anything like this for me before.  Not that I’ve asked.  And while I tried to protest, I immediately felt better.  I slept with them (him and the ice packs) through the night. 

And the thing about it is, if this isn’t love, I don’t know what is. 

Really. 

But all of the insecure illness feelings come back in a rush of anxiety. 

This should be our lives 40 or 50 years from now.  Not right now.  These physical struggles disgust me.  I can’t hide them, but I so wish they weren’t happening.

And then I have to remind myself that things won’t always be like this.  There will be better days and worse days. 

I don’t know how to do this.  And I don’t feel that I deserve someone like this.

And sometimes, when someone does something so unselfishly, because they want to and not because of they have to or because of the recognition they’ll receive, it makes you want to shout it from the rooftops. 

Love is not just a noun.  It’s a verb.  It’s more than a word.  It’s an action.  And sometimes actions speak louder than words.

They speak volumes, so loud, that there’s nothing left to say.

The Trials And Tribulations Of Electronic Medical Records And E-Prescribing* **

So, every once in awhile, I move away from posts that are extremely personal, emotional, and philosophical, to talk about the more practical aspects of being a patient, with some old-fashioned research thrown in for good measure.  

Electronic Medical Records

Recently, the hospital that my rheum and other specialists are at, and the student clinic where my primary care doctor is, moved to an electronic medical records system. 

At your first appointment after the system was instituted, you received an access code, which allowed you to go online and access your medical records.  You don’t have to, but for someone like me who is chronically ill, the possibility of having my medical information at my fingertips was very appealing.  So I signed up pretty much right away.

Until I discovered that there was an IPhone App I could download, I did not realize that the system I was using is actually of the “Vendor Created, System Hosted” variety (Halamka, et al. 2008).  This means that a third party created the system and the health system I belong to hosts it. 

In other words, Epic Systems, a company out of Wisconsin, created an electronic records system, known as MyChart.  This system has been around since the late 1990s. Along with Halamka, et al. (2008), Hassol, et al. (2004) and Serrato, Retecki, and Schmidt (2007) look specifically at the MyChart system.

Through the patient portal online, you can do a variety of things: request and cancel appointments, request prescription renewals, review health history, view immunization records, view test results, send messages to your healthcare team, and pay bills online. 

Here are some of my observations thus far:    

Likes:

-         You can create tables that compare past test results, which is useful to monitor certain levels.

-         I can e-mail my doctors’ offices, schedule appointments, cancel appointments, etc.

-         I get an automated e-mail when new results, messages, appointments, are posted.

-         Unlike before, both the hospital and the student health center can see records.  Before, only one could see all records and the other could not, which made things very tricky when you have a primary care doctor at one and all your specialists at the other.  This was a serious flaw in the old system, which I am grateful has been fixed.

-         Presumably no more having to pay money to get your hands on your medical records and test results. 

Dislikes:

-         I can only see my records/history from AFTER the system went into effect.  Presumably, the interface that my doctors use allows them to see the entire health record, not just since the implementation of the new system, but I am not certain of this, since I have never seen the system from the other side.

 

-         No one, in terms of doctors, knows how to use the system, which has increased the time of clinic visits by a significant degree.  It was instituted in the summer and there is still a steep learning curve, which I know has also been frustrating for the clinicians.

-         If there was some potentially devastating test result, would it get posted to the health record that the patient could interface with?  Or would it not be released until the doctor delivered the news to the patient?

-         I don’t kn0w what every test means.  I know certain levels and things like that, but not every test.

-         One of my medications is not commercially available in the United States, and therefore, was not in the database.  I was told the system would not allow the doctor to enter a medication not already in the system.  This seems like a huge liability, especially as far as drug interactions go.

-         There are some inconsistencies.  For one thing, the prescribing doctor on most of my medications is incorrect.  But there is no way to change things.  While you can interface with the medical record, as the patient, to my knowledge, you cannot manipulate it, even when you find things that are incorrect.

In their study, Hassol, et al. (2004) found that a third of people felt that their medical record and information was not complete.  Further, there was a distinct inability to understand tests results, especially abnormal ones.  Further, Hassol, et al. (2004) confirm my worst fears that patients can see any and all test results, even ones that are potentially devastating, before their doctor has had a chance to contact them about them directly.

One would hope that one benefit of having access to an electronic records system is that there would be greater coordination of care across specialists for the same patient.  However, this has been identified as one area that is lacking (O’Malley, et al. 2009). 

This is something I have noticed generally about my care, and something that I hoped would be improved by this system.  As I suggested, now all of my doctors in the same health system have access to my records, however, whether doctors put that information to good use is up to them.  Additionally, when I saw my PCP last week, she was very frustrated because there has been a variety of contacts (via phone and e-mail and through the portal) made between me and various doctors’ offices in the past month, and my PCP was having difficulty finding the last note she had made in my record when I saw her a month ago.

Negatives on a broader scope include electronic medical records widening the healthcare disparity based on race, as whites are much more likely to utilize these systems than are blacks and other minorities (Goel, et al. 2011; Roblin, et al. 2009).  Additionally, there are various privacy concerns due to the potential negative effects of the wrong people gaining access to electronic record information (Li, et al. 2011).

I have to say that I like the ability to e-mail questions, refill requests, and requests for making and canceling appointments online.  It saves me the hassle of going through my phone to find the doctor’s office number, of which I have many, and waiting on hold on the phone to talk to a person.  However, when doing things via the portal, this then puts the onus on the doctor’s office to contact the patient in regard to whatever message or request they have sent, rather than it being the patient’s responsibility.   

It may or may not be surprising then that Hassol, et al. (2004) found that patients preferred online communication the best, while doctors preferred telephone and in-person communication in preference to online. 

E-Prescribing 

Even before the adoption of the electronic records system was instituted in my health system, prescriptions went paperless.  Prescriptions are all electronic, so not only does the patient not have a paper copy of the prescription, but if there is an error, the patient won’t necessarily be able to catch it, because they don’t really get the opportunity to view the prescription that gets put into the system by the clinician.

I have had varying issues with this, as well:

-         My original Humira dose was totally wrong.  It somehow got listed as being taken twice a week instead of twice a month, necessitating the pharmacy to call my doctor to correct the error.

-         The prescription gets sent to the wrong pharmacy.  This has happened almost every time, and has involved me needing to contact the doctors’ offices to get the prescriptions re-submitted to the correct pharmacy.  Unfortunately, the way my prescription insurance works, I can’t get all of my prescriptions from the same pharmacy.  The “normal” ones I get at CVS, the Quinacrine I have to get from a specialty pharmacy that compounds, and certain other special prescriptions I have to get from the hospital pharmacy.  This system might be ideal for patients who are able to use one pharmacy for all their medications, but it seems to me that if you use more than one, it really complicates things.

-         It defaults.  So for the Humira, when I was trying to get the pre-filled syringe instead of the pen, it automatically selects the pen and the nurse or clinician had to notice this and change it, which didn’t happen, again necessitating contacting the doctor’s office multiple times to make the change.

I am not sure of the specific E-Prescribing system that is used by my healthcare providers, but whichever one it is, I have noted above the various problems that I have experienced.

While some have suggested greater efficiency with E-Prescribing (Agarwal, et al. 2010; Grossman, et al. 2012), E-Prescribing actually tends to take doctors longer than simply handwriting them (Lapane, et al. 2011), and can increase, rather than decrease, the amount of errors made that can have adverse consequences on patients (Palchuk, et al. 2010).

The thing I really don’t like about this system, with all of its flaws, is that there is no way to get a paper prescription.  Even when the prescription keeps getting messed up.  And there is no way to see this, because you never see what the physician is putting into the system.  I’m all for technology, but to be so technologically dependent, even when there are clear errors, is just plain annoying. 

A lot of problems in E-Prescribing occur when there is a lack of technical support (Crosson, et al. 2011), suggesting that adequate training of healthcare workers is needed, and adequate support needs to be provided when problems occur.

I’m not trying to be a Negative Nancy here, but of course, all of this presupposes that the patient has adequate internet access and is technologically savvy enough to use the systems.  And the doctors have to be technically savvy, as well, which may make it difficult to learn a totally new system while having a regular caseload of patients. 

If your healthcare providers haven’t hopped on the electronic health bandwagon yet, it is only a matter of time.  But given all of the issues that I and previous research has noted, the bottom line is that these systems are only as good as the people that created them and the doctors and other medical personnel that use them.

These are screenshots from my IPhone of the sign-in screen to my health system-specific portal (left) and the actual interface of the MyChart capabilities (right).  

These systems look quite different between the IPhone interface and the PC interface, so I have also included screenshots of the sign-in screen (top) and interface (bottom) as they appear on my PC.  Without showing too much of my personal health information, I wanted you to see all the various things you can do with the portal.

 * I’ve excluded from analysis articles that come out of the UK and Canada, as their healthcare systems, as they currently stand, are different from ours.

**For this I looked specifically at research related to electronic health records and E-Prescribing, rather than health informatics, in general, for which there is a large literature.

References

Adler, K.G. 2009. “E-Prescribing: Why the Fuss?” Family Practice Management (January/February) 2009: 22-27.

Agarwal, R, C.M. Angst, C.M. DesRoches, and M.A. Fischer. 2010. “Technological Viewpoints (Frames) About Electronic Prescribing in Physician Practices.” Journal of the American Medical Informatics Association 17: 425-431.

Crosson, J.C., R.S. Etz, S. Wu, S.G. Straus, D. Eisenman, and D.S. Bell. 2011. “Meaningful Use of Electronic Prescribing in 5 Exemplar Primary Care Practices.” Annals of Family Medicine 9 (5): 392-397.

Goel, M.S., T.L Brown, A. Williams, R. Hasnain-Wynia, J.A. Thompson, and D.W. Baker. 2011. “Disparities in Enrollment and Use of an Electronic Patient Portal.” Journal of General Internal Medicine 26 (10): 1112-1116.

Grossman, J.M., D.A. Cross, E.R. Boukus, and G.R. Cohen. 2012. “Transmitting and Processing Electronic Prescriptions: Experiences of Physician Practices and Pharmacies.” Journal of the American Medical Informatics Association 19 (1): 353-359.

Halamka, J.D., K.D. Mandl, and P.C. Tang. 2008. “Early Experiences with Personal Health Records.” Journal of the American Medical Informatics Association 15 (1): 1-7.

Hassol, A., J.M. Walker, D. Kidder, K. Rokita, D. Young, S. Pierdon, D. Deitz, S. Kuck, and E. Ortiz . 2004. “Patient Experiences and Attitudes about Access to a Patient Electronic Heath Care Record and Linked Web Messaging.” Journal of the American Medical Informatics Association 11 (6): 505-513. 

Lapane, K.L., R.K. Rosen, and C. Dube. 2011. “Perceptions of E-Prescribing Efficiencies and Inefficiencies in Ambulatory Care.” International Journal of Medical Informatics 80: 39-46.

Li, F., X. Zou, P. Liu, and J.Y. Chen. 2011. “New Threats to Health Data Privacy.” BMC Bioinformatics 12: 1-7.

O’Malley, A.S., J.M. Grossman, G.R. Cohen, N.M. Kemper, and H.H. Pham. 2009. “Are Electronic Medical Records Helpful for Care Coordination? Experiences of Physician Practices.” Journal of General Internal Medicine 25 (3): 177-185.

Palchuk, M.B., E.A. Fang, J.M. Cygielnik, M. Labreche, M. Shubina, H.Z. Ramelson, C. Hamann, C. Broverman, J.S. Einbinder, and A. Turchin. 2010. “An Unintended Consequence of Electronic Prescriptions: Prevalence and Impact of Internal Discrepancies. Journal of the American Medical Informatics Association 17: 472-476.

Roblin, D.W., T.K. Houston, J.J. Allison, P.J. Joski, and E.R. Becker. 2009. “Disparities in Use of a Personal Health Record in a Managed Care Organization.” Journal of the American Medical Informatics Association 16 (5): 683-689. 

Serrato, C.A., S. Retecki, and D.E. Schmidt. 2007. “MyChart – A New Mode of Care Delivery: 2005 Personal Health Link Research Report.” The Permanente Journal 11 (2): 14-20.