Friday, February 28, 2014

Back on Cellcept. Hooray!

In Wednesday's post, I told you how emotionally prepared I was to accept my doctor's recommendation to start Methotrexate. I was ready and willing to go big-gun when I arrived for my appointment...but before we moved forward, my doctor wanted to hear details of what had transpired in the two months since I'd seen him. (Note that my appointment wasn't scheduled for a month later, but because I was in such pain every morning, and my attempt at a second prednisone taper was clearly failing, I called and moved up my appointment.)

I told him about the joint pain every morning, that didn't subside until 1 or 2pm, or sometimes as late as 6pm. I told him about the swollen lymph nodes, the tingling sensation in my hands, my light headedness, and my fatigue. I told him about the swollen joints, the hot-to-the-touch joints, and the sensitive elbow and foot nodules. He then told me about my lab results, which showed a drastic increase in disease activity. In conclusion, he and I deduced that I was in an all-out flare - and it was time to make a move.

So although we started the appointment with the intention of adding Methotrexate to my medication regimen, after he reviewed my symptoms, asking for my input along the way, we decided that CellCept would be the best option at this time. And I jumped for joy, primarily because I've taken Cellcept before and I know how well it worked the last time. But I was also relieved because I know what to expect with the drug - I know how it's administer, have a firm grasp on the side-effects, and have a good idea of how I typically respond to the drug. Knowing what to expect makes all the difference!

As soon as we settled on CellCept, I felt as if my doc was throwing me a lifeline. Immediately, a burden was lifted. The burden of waking up morning after morning, completely overcome with pain. The difficulty sleeping, the challenge of pushing off the sheets first thing in the morning, having to choose certain pajamas that were easy to remove. The silver lining was that throughout the day, the pain did subside. But waiting the four, six, or eight hours until that relief occurred was taking its toll. But with Cellcept on my side, I felt like the world was opening up again. Not only did I see visions of pain-free breakfasts and unrestricted morning activities, I saw the possibility of the return of a happy, flare-free lifestyle. One where we can travel when we want to, make plans when we need to, and simply return to the "living well" lifestyle I'd become accustomed to, one which is relatively void of symptoms. (I still have the afternoon fatigue to contend with - but I can manage that.)

You never realize how your outlook on life changes when you're sick. After hearing that Cellcept would be added to my list of medications, I realized that I'd put a ton of plans in the "up in the air" category for the coming year: the speaking engagements I have scheduled for the spring, and the trip my husband and I have planned for this fall. Even the Girls' Spa weekend I have coming up next weekend. In the back of my mind, I wondered how, make that if, I was going to be able to make them happen. Now, with Cellcept in my pillfold, I feel confident that I'll feel good enough to fully participate in each one of them.

But don't worry - I'm not going to go crazy. I will continue on the path to wellness by getting my sleep, monitoring my activity level, and not overdoing. And there's always the possibility that my disease has changed such that Cellcept won't be the cure all it was before. But I don't believe there's any harm in hoping for the best!

While Cellcept is a welcomed addition, it's not without slight trepidation that I start the drug. It does have its own set of side-effects. But this article I posted last year about there being no clear link between lupus and lymphoma eases my concerns.

Next week, I'll continue with details of my appointment and changes in my medication.  Now more than ever do I need a Pillbag to keep it all straight!

Wednesday, February 26, 2014

My lupus decision making process, better known as R-E-L-D!

When I'm faced with a big decision regarding my health, as I feel I am now re: the choice of starting a big gun medicine like Methotrexate, I tend to follow a pattern. In fact, my modus operendi looks something like this: Resist, Educate, Listen, Decide.

Step 1: I "resist" the change to begin with, be it a new drug, a lifestyle change, or an alteration to my routine. Whatever "it" is, I don't like the sound of it the first time it's suggested to me. Sometimes, I reject it outright, like I did years ago when it was suggested that I order my groceries online. I was sure online ordering was only for the sick and disabled...and it wasn't until I wised up a few months later that I realized having my groceries delivered was designed exactly for people like me (the sick and disabled!) Other times, when faced with a new suggestion, I turn up my nose at the idea, but reluctantly agree to consider it. Either way, an immediately welcomed change, it is not.

Step 2: I decide to "educate" myself about whatever change has been suggested - forcing myself to research, talk about, or explore the pro's and con's of said change. I used to not enjoy this research part very much...but now I actually find it very empowering. The longer I have lupus, the more comfortable I am probing other people for information, be it patients who've experienced the same thing, or medical professionals who could weigh in on the situation. If I think someone might have a morsel of information that could teach me something about the subject, I ask.

Step 3: I open myself up to "listen" to signs and signals that point me in the direction of a decision. I will myself to become more attuned to coincidences, and make an effort to make connections that I might otherwise dismiss. Like the time I happened upon a story in a magazine where a woman was talking about her struggle to decide to go part time at work. I was, at that very moment, struggling with my own decision to take a part-time position at my office. I could have just brushed off the occurrence, convincing myself that the circumstances surrounding her deliberation were surely different than mine. Instead, I read the entire article, and took it for what it was: a sign that if this random woman in a magazine could muster up the courage to go part time, so could I. In instances like these, I attempt to embrace the coincidence - chalking them up to fate, divine intervention, or what have you. I figure I can use all the help I can get! (Here's another example of acknowledging the signs around me - in my decision to start Cellcept years ago.)

Step 4: I "decide" on a course of action, based upon the process above. By the end, the choice to be made has usually become so crystal clear that I have very little difficulty making the call in the end.

Of course, sometimes I wish this little ritual of mine wasn't quite so predictable. I wish I could break away from the structure of my decision making process and just spontaneously come to a good, solid conclusion within moments. But it doesn't work like that. And it probably shouldn't, if I'm to make prudent, well-thought out decisions. And so I've learned to expect my ritual. I know the steps to take, and I know how the process is going to go.

And so it went with my decision on whether or not to start a big gun drug like Methotrexate: I resisted, then researched, then randomly picked up a book club book, only to read about one of the main characters being on, drum roll please, Methotrexate. Thus, I decided that everything was pointing me in the direction of starting the drug, including the fact that my prednisone taper wasn't working. I went back to my doctor, and confidently told him that I was ready to start Methotrexate. It just took about two months for me to realize it. Not bad in the grand scheme of things. I'm just glad the book I read was THIS month's book club book...rather than our casual summer reading!

In an upcoming post, I'll tell you in detail the plan that came from that most recent doctor's appointment. Never a dull moment in lupus land, I know that!

Friday, February 21, 2014

Guest Post - Dr. Donald Thomas, Author of The Lupus Encyclopedia - due out this year!


A few years ago, I ran across a very interesting book called, “Say The Magic Words” by Lynette Padwa. It was eye opening in that it talks about the inside language, policies, and procedures of different professions. Each profession has its own “secret” language, and if you have an inside knowledge of this “secret” language and use it, you can really gain a significant advantage when dealing with these different specialties. This book goes into how to speak to attorneys, car dealers, doctors, hairstylists, hotel reservation agents, landlords, nannies, mechanics, real estate brokers, therapists, teachers, and many more.

It got me thinking that the exact same thing occurs between doctors and patients. Doctors go to school for many years to learn and refine their skills on how to take care of patients, but in the end, they end up speaking a highly technical language that is “foreign” to most people. Yet, since we are completely immersed in that language and processes most of our lives, we can easily forget what it is like to be a nonmedical person. This unfortunately, can lead to a clash between some doctors who forget how to connect and the patients who need our help. We actually do not want to be a “secret” language, but it often ends up being that way. Many doctors are very good at learning to communicate to the patient (i.e. interpret things in layman’s nor nonmedical persons’ terms), but unfortunately, some never reach this important point.

As the patient, though, you do have it in your power to turn things in your favor. If you know the right things to do and say, it can actually help communicate what is wrong and what you need to the most mechanical, scientific physician. If fact, I feel that this is such an important topic, that I devoted an entire chapter in my upcoming book, The Lupus Encyclopedia, to this topic. In the meantime, at the kind request of Sara Gorman, I’d like to present some of the “secrets” on getting as much out of your doctor’s appointment as you can in the next few paragraphs with some “do’s” and “don’ts”.

1) DON'T go in with 4 pages of single spaced, 2000 word list of all the symptoms that have occurred since your last visit unless you are prepared to see your doctor's eyes roll and try to compose him or herself. On the surface, it is easy to convince yourself that you are doing the right thing; you are being very comprehensive, and you are making it “easier” for the doctor to know exactly what has happened. But you must remember, that your doctor has many patients to see that day, plus has many other duties (reviewing labs, reading x-rays, discussing cases on the phone with other doctors, studying the most up to date research articles) and he or she only has so much time in a day to do everything. This sort of list will only overwhelm him or her and will most likely not even be read, or will be skimmed at best.
     - Do write down 3 questions or problems that are most important to you and write them down very briefly; be short and concise; maximize your description efficiency.

2) DON'T say... "Oh by the way...." when your doctor is about ready to leave the room. He or she probably has rooms full of other patients and was mentally prepared to go onwards.
     - Do give your list of 3 questions or problems to your doc immediately at the beginning of the visit so he or she can maximally devote appropriate time to your concerns and address them. Also, make sure to let him or her know what medications need filled at the very beginning as well (it does take some time to write prescriptions).

3) DON'T be rude or demanding to staff, phone people, office manager, then be all nice to the doctor.... you will only sabotage your image at the office and things will happen that you don't want (it shouldn't, but people are people, and they react certain ways to impoliteness). Upfront I will say that the vast majority of patients are wonderful and nice to everyone, but I am occasionally surprised to find out that someone who I thought was very nice is actually rude and demanding to the rest of my staff and have a bad reputation. This ends up causing friction between the staff and the patient and only ends up making it difficult for that patient when they are not in the room with the doctor.
     - DO make that extra effort to make ALL staff your best friend, always smile, be courteous; brownies work great. If a staff person is impolite or rude to you; smile, back off, write down the person's name, and don’t confront the person. Then when your visit with the doctor is over, ask to see the office manager, and very tactfully let him or her know what happened. We only want the best staff... any rudeness or unprofessionalism is bad... and we may have a staff person who we not know is behaving that way and needs extra attention/training. You, the patient, are the most important person to us, and we want you to be treated courteously and professionally at all times.

4) DON’T ramble on and on about a symptom and all of the circumstances around it including what your aunt was doing at the time and how you were on vacation because of such and such and such and such and such and such (you know what I mean... we all know those people). Some people are great talkers and they view themselves as great communicators not realizing that they take up way too much time with their descriptions. By the way, people who tend to do this are usually incredibly nice people, and view themselves as good communicators. They often get upset when they are “cut off” and not allowed to finish their stories; they often feel that “no one listens to me”. That may be a good clue, as many people who tend to “ramble on” do not have the self-awareness that they do so.

     - DO write down your symptoms succinctly. Writing it down and rehearsing your symptoms can be good practice at how to verbalize your symptoms in a concise manner. If you have pain in your back... write down when it started, where in your back, did it come on gradually or abruptly, does it come and go or is it constant, do any body postures/activity/meds/heat/ice make it feel better, does it radiate anywhere, what have you taken for it and did it help, have you ever had the problem before, and have you had other symptoms such as fever, weight loss, trauma, etc. Describe the problem chronologically from the moment it happened (get rid of all the extra fluff) to the present moment, is it better/worse/or the same at the present time. Anywhere from 80% to 90% of the time, doctors know what is wrong with a person simply from getting an excellent, concise history.

Here is a good website, the Pain Resource Center, that lists a succinct way to describe pain. It can also be used for other problems such as nausea, tingling sensations, depression, cough, etc. This list may seem very mechanical, but if I had someone simply answer these questions each time they described a symptom, they would be way ahead of the game and make my diagnostic job much easier (and hence, make a correct diagnosis quicker and help my patients get better quicker).

5) DO always take a list of your meds/allergies/med problems, keep it up dated at all times. When the nurse takes your med list, don't even answer anything... just hand over the list... this can keep huge mistakes from occurring in the med list. In fact, this recently happened to me. I only take one medicine, I answered the nurses question about my meds, not realizing she did not ask me everything. The list the doctor actually saw was different. If I had simply handed her my list of 1 medicine, she would have easily deleted the incorrect medicine that she had on her list.

This is absolutely one of the most important habits to get into. Every day, at least several times a day, I run across incorrect medication lists. The patient “assumes” that the doctor’s list is always the same as what they are taking. This does not take into account possible errors from the pharmacy, older prescriptions accidentally getting refilled instead of newer ones, medicine changes not being noted correctly in the chart, other doctors’ medication changes/additions/deletions. Protect yourself. Keep a list on your computer, update it immediately after any change, print out the new list (at least 2 copies, one for you and one for any health professional), throw out the old.

6) DO be honest with everything you tell your doctor and other medical providers. The only way you can get proper medical care is if you tell the complete truth. For example, we know that 50% of our patients don’t even take their Plaquenil (hydroxychloroquine) regularly or use their sunscreen religiously every day. These are the two safest therapies for lupus. If I have a patient who is flaring up, and I assume they are taking their Plaquenil and using their sunscreen, my next step may be to add a stronger, and potentially more toxic immunosuppressive medication when this step may not be even necessary. If that person puts on their med list “Plaquenil, 200 mg tablets, 2 tablets 4 days a week” instead of “daily”, that lets me know immediately that we don’t need to discuss more aggressive therapy, we need to discuss compliance and how to help that person learn to take his or her medications more regularly. On your medication list, don’t write down what you are “supposed” to be taking, but what you are really taking. Another example would be the person who doesn’t have enough money to pay for their CellCept. He or she may only be taking it half the time due to expense and may feel too embarrassed to let us know. If your lupus is not under good control and this is the reason, we need to know. This honesty can lead to more productive discussions such as could there be a less expensive alternative, or could we put you into contact with some drug assistance programs.
This is how life works, isn’t it? Anyone who is old enough eventually learns that honesty is always the best policy (even when it is painful), as it almost always results in the best outcome in the long run.

7. DO consider downloading, filling out, and taking this form to each visit with your rheumatologist - The Lupus Checklist.

I hope this information is helpful in at least giving some insight into how to make the best out of your appointment with your doctor. Of course, communication is a two way street, and doctors need to learn to be better listeners as well. Unfortunately, you as the patient have no control over how good a listener your doctor is, but it is in your power to improve your chances of being listened to and getting the best results as outlined above.

Wednesday, February 19, 2014

Lupus is unpredictable, so beware of the slippery slope!

In relating the events of the last few months to my mom and dad, I caught myself saying, "You know, it's hard to explain, but lupus is just unfair." In his wisdom, my dad paused, and replied, "Well, maybe it's just that it's unpredictable."

Indeed, Dad, you're right.  It's the unpredictability of lupus that's so confounding. The symptoms, the flares, the side-effects. You never know what you're going to get hit with or when. Nor do you know how long it's going to last. But I quickly reminded myself that I know this. I've known this for awhile, and I've actually learned how best to combat it. If lupus is going to be unpredictable, then I'm going to be as predictable as possible. I suppose that's why I nap for two hours every day, why I try to get to bed at the same time, why I limit the number of errands I do, and why I space out our travel, social activities, and my working gigs so that I don't overload myself. While I'll never claim to have lupus all figured out, I do try to stay one step ahead of her. If she's going to try and unleash her haphazardness on me, I'm going to hit her right back with order and method.

Sometimes, I feel like my life is a bit over-run with guidelines. But those guidelines make sure I don't unknowingly slip into old habits of running my body into the ground or skimping on rest. It's all too easy to push off a nap or stay up late. And if I do it once, it's a lot easier to do it again. Before you know it, I'm no longer resting when I need to, or taking it slow and easy as I should. It can be a slippery slope once the guidelines go out the window...and that usually doesn't turn out so well.

In fact, I was just explaining this to a new babysitter regarding the girls. As I was recounting the "rules of the afternoon" (snack only between 3-4pm, only milk or water to drink (no juice), and choice of snack being fruit, cheese, yogurt, or the sweets), I found myself starting to apologize for all of the rules. But then I followed up by explaining what happened before the rules went into place while babysitters were on duty:

When there was no designated snack time, food was being consumed continuously throughout the afternoon - some snacks even creeping up toward 5:30 or 6pm, leaving the girls with full bellies at dinner time. Choice of beverage became a juice fest - with cups of cranberry and orange juice being doled out all afternoon long. And the sweets. Oh my. They were having cookies and candy to their delight. It was no one's fault except mine - since there were no guidelines to go by. It started out innocently with a cookie one day, and a cup of juice the next, I'm sure. But without any guidelines, one time became every time, and then the slippery slope began.

Today, the girls are fine with the guidelines. In fact, I find that kids like rules. It allows them to work within a certain framework with which they're familiar and comfortable. I think they like knowing what to expect, too. Of course, we're allowed to veer off the track now and again. Special days get special treats, and there are always exceptions.

Just like there are exceptions with lupus, too. A special late night here, or a busy morning of errand running there. But the way the way I see it - there's already such a fine line between one's disease activity being stable and unstable. If there are some simple stipulations that I can follow to help tip the scales in my favor, I'm all for it. The guidelines definitely help to keep me on the straight and narrow...and living well, day after day!

Be sure to stop back on Friday for a guest post by one of my favorite rheumatologists - Dr. Donald Thomas, author of The Lupus Encyclopedia, due out later this year. In Friday's post, he'll cover the patient do's and don't's during a doctor's appointment. A post that's sure to be helpful to all of us!

Monday, February 17, 2014

Health Monitor Magazine - Tip for lupus? What else could I say but "Nap!"

When you're at your next doctor's appointment, be sure to flip through the latest issue of Health Monitor Magazine. You might find my face smiling back at you! I was recently interviewed for an article on coping with chronic illness, and I think the spread turned out great. The magazine wanted to hear everyday tips for living well with your disease - and I couldn't avoid talking about my nap. It's been so essential for all these years! Click on the images below to read tips from those interviewed, or read the article here. Looks like some great advice all around.

Friday, February 14, 2014

When to "cry uncle" - determining how much is too much lupus activity.

Continuing from Wednesday's post, question number three still lingers in my current medication debate. I find that as a patient, it helps to do some personal inventory outside of my appointments with the doctor. This allows me to make the most studied, informed decisions regarding my health. Of course, no matter what conclusions I may come to, my doctor gets to weigh in on the situation. I could show up to my next appointment, and he may tell me that my kidney function isn't good, or my lungs aren't clear, or my blood tests are out of whack. Any of those might necessitate a change in medication or treatment, which would make whatever decision I've come to obsolete. While I would never dismiss or disregard my doctor's instructions, there's no question that doing my own personal R&D will make me a more prepared collaborator during those appointments. 

So question number three - If the pain is tolerable, can I keep up the charade? As you know, I've upended many aspects of my life to accommodate my disease over the years. I've inserted naps, rearranged agendas, cancelled plans, and revised goals in order to do what I can to keep disease activity at bay. And I've reached a comfortable level of living well, despite those accommodations. While I know my life with lupus isn't necessarily normal, it's my normal. There's a certain level of predictability that I've come to expect, and it works. But for the past few months, I've been forced to create additional workarounds throughout the day in order to stave off severe symptom activity.  And the question is - how long can that go on before I conclude that those new lifestyle accommodations are abnormal? When do I decide that I'm no longer living well, despite lupus? 

My dad and I were talking about how difficult this can be to figure this out. If you're like me, you try to put a pretty positive spin on life as it is. In fact, my dad referenced a book that I'd recommended to him awhile back, "Flying Without Wings", by Dr. Arnold Beisser. (I blogged about that book here.) Dr. Beisser says there's a certain "degree of denial" that's necessary for any of us to carry on in this crazy world, given whatever your cross to bear. And I completely agree with that. But because of that fact, I made a promise to myself years ago, once I'd recognized how permanent this whole lupus thing was going to be. I could think positively, and I could hope for the best. But when it came to assessing how things were really going, I was going to need to muster up the courage to distinguish hopes from reality. I needed to be strong enough to take a step back, and objectively evaluate how good (or bad) my disease activity was. 

What did that mean? It meant I wouldn't lie to myself. I wouldn't pretend to be "feeling great", if I really wasn't, nor would I lower my standards so that I could say things weren't "that bad." Of course, this promise came after years of doing just that - acting like the disease wasn't affecting me, even though my body was saying something else. After finally learning how to embrace my disease rather than fight against it, I concluded that being honest with myself is essential for living well. 

So - I'm not going to pretend that the changes I've made over the past few months aren't out of the ordinary. The trips we've put off, the nights we've stayed in, or the appointments I've cancelled in order to try and keep this flare from progressing are not long-term solutions. Those are things I do in crisis-mode, or should I say, flare-mode. When it comes to living well as a permanent state of being - my definition includes a certain degree of painlessness, while maintaining a personally fulfilling lifestyle (whatever that may look like). And if there's a way (via methotrexate, cellcept, or some other big gun medication) to achieve that personal level of comfort and fulfillment, then I say bring it. 

I have too much to do and too little time to waste pretending that my joints don't hurt. I can plot all day long, but if at the end of this tapering period, my level of pain is unacceptable to me, then I need to do something about it. And if my doctor has a solution, I'm certainly going to take him up on it. 


Wednesday, February 12, 2014

Psyching myself up for Methotrexate...while plotting away at my line graph.

Per last week's post, you know I had some homework to do. At my last appointment, my doctor suggested that I try methotrexate, a drug that, up until now, I've never had to consider. Over the past several months, my joint pain and swelling has been a bit unmanageable, so he thinks we should try something new. I asked for a couple of months to a) think about it and b) give my current medication one last shot at managing my symptoms. I'm currently in the middle of tapering off (yet again) 10mg of prednison daily - headed to the goal of 5mg every other day. As I'm right in the middle of my taper (I'm down to 5mg every day), it's a good time to do a bit of assessing.

Here's are the questions on the table:

1) What's methotrexate, and what would it look like if I started taking it?

2) What does my current level of disease activity look like? Is it something I can tolerate? Is it something I should tolerate?

3) If my current level of symptom activity is manageable, is the lifestyle I've adopted to keep it that way manageable?

Let's take number one: Methotrexate The goal here is to simply psyche myself up for Methotrexate. I can't think of it as "the drug I really don’t want to take”, which is the way I felt when my doctor brought it up. Instead, I need think, “here’s a drug my doctor’s considering – what are the pros, the cons, and how will it compare to what I’m currently taking (re: side effects, symptom control, etc.)?" Oh, what medical maturity the latter requires!

But I've done my due diligence. I've researched the drug online. I've asked my other doctors for input. I've talked to my friends who are on it. I've considered the side effects and the limitations, and mentally prepared for them as much as possible.  Most importantly, I've acknowledged that if my current medication regimen isn't doing the job, I need to find something that will. Sure, it's difficult to comprehend why my beloved combination of plaquenil and prednisone has suddenly stopped working...after all these years. And I could continue to search for answers, or even worse, try and force my body to conform. But what would be most productive is to listen to my body, and accept what it's saying. If my disease has changed such that my medication needs to change, then that's what I need to do.

Number two - symptoms. Are they manageable? The only way I know how to determine how good or bad my symptoms really are is to track them. When I'm dealing with varying degrees of joint pain and swelling from morning until evening, and sometimes through the night, there's no way I can accurately or objectively log that activity in my head. I start getting yesterday's symptoms confused with the day before, and before you know it, I can't remember how long it's been since I haven't been able to turn over in bed, or fasten my clothes first thing in the morning. So it's back to logging I go.

I started charting my symptom activity via My Lupus Log, an app on my phone. I included a note with each day, attempting to document how disruptive the symptoms were to my daily routine. I also noted how often the pain lasted during the day, and how it affected my overall quality of life. At this point, I’m not interested in what factors might be contributing to my flare. I just want to know how well my current medication is managing that flare, and how reasonable (or unreasonable) that level of management is. 

While the app helped, it wasn't exactly what I needed. Here's why: my symptoms change almost every two hours. I might wake up with pain that's a 6.5 to 7 on the pain scale, but within 3-4 hours, it's down to a 4.5. And then by 2pm, it's down to 1.5. I wasn't able to figure out how to track that kind of detail on the app, nor on my chronic control spreadsheet. So I created something new - a line graph (example below) that allows me to plot my pain levels every two hours (or actually every hour, if necessary.)

It's working quite well - and the visual picture of what I've been experiencing is really coming into view. (It actually looks quite similar to the generic picture of a line graph I cut and pasted from google images above. Imagine the hours of the day on the horizontal axis, and my pain level as the vertical axis. Ignoring the initial plots at zero on this graph, my pain starts out high in the morning, and then falls to a reasonable level by the middle of the day.) 

I'm hoping that the pain variance is primarily due to the fact that I'm tapering off of prednisone. Every time I go down a step (usually by 2.5 mg), my body takes about 10-14 days to fully adjust and for the pain to level off. But at the 7-10 day mark, I'm about ready to throw in the towel! I'm also preparing myself that the "next step down" may be one step too many. But I've got my graph, and I'm not afraid to use it - although thankfully, I have another two weeks before the next taper!

I'm going to hold off tackling question #3 until Friday, as I think it deserves a post of its own. I have some more tracking to do in the meantime - know that I will continue to "plot" as the plot continues, and I'll be sure to keep you posted!

Monday, February 10, 2014

Listening to that "little voice" - another lupus lesson

Last week, I offered to make dinner for a friend who'd just undergone surgery. As I was writing out the grocery list for the ingredients for my homemade lasagna (a pretty darn good dish, if I do say so myself), a little voice inside said, "Do you think you could just buy a pre-made lasagna?" I paused, but then quickly dismissed the idea, telling myself that, of course, the family would prefer a home-cooked meal. I finished my list, and headed off to the store.

As I was browsing the aisles, that little voice came back, this time saying, "You know, when YOU were sick, your girlfriend brought you that fabulous pan of already made Safeway Lasagna, and you love it. Want to just pick one up instead of making it?" I thought for a moment, weighed my options, but then tossed the suggestion aside again, convinced that a homemade lasagna was the only way for me to really convey how much I cared. (I know, I know...that little voice should have strung me up by my toenails for that last comment...but little voices normally don't resort to violence.)

Later that morning, I had another errand to run...this time to the post office. As I got in the car, and started to pull out of the driveway, that little voice came back, this time saying, "How about asking Johnny to run this package to the post office later? He's always happy to do that for you."  I stopped the car, partly to consider the idea, but mostly because I was surprised at how impertinent this little voice was becoming. Within moments, I decided against it. Johnny had stuff to do (I told myself), and I was feeling pretty good. While I DID have a full day of activities ahead of me, I was sure that I could manage.

Well - at the end of the day, I found that I actually couldn't manage. I'd overdone it...having run the errands in the morning, cooking a good part of the day, rushing around that evening to deliver the meal before heading out for the evening. As I crawled into bed that night, I wasn't down right sick...but I'd definitely felt better. I'd just done too much - and the worst part was that I'd had options...good ones, too...I just chose to ignore them. Ugh.

Fast forward two days later. The girls were at school, and I had the morning to myself. I'd planned to work out before picking up the girls, and I was actually in the middle of typing an email to my girlfriend saying, "I'm going to go work out in a few...", when that little voice came back. Again. This time, it said, "What would you think about taking a nap right now?" I stopped for a moment, and then hit "send" on my email. I walked upstairs, eyed the treadmill for all of five seconds, and instead grabbed Dar and headed to bed. I woke up an hour and 20 minutes later, refreshed and ready to go. I still had just enough time to work out, so I hopped on the treadmill. As I started up the machine, I thought I heard a little voice whisper ever so softly, "Nice going", but I might have been mistaken. I had on earphones, after all.

Friday, February 7, 2014

NIH announces Lupus focus - joining forces with pharma and non profits

Good news on the lupus research front! 

On Tuesday, the National Institutes of Health, 10 large drug companies and seven nonprofit organizations announced an unconventional partnership intended to speed up development of drugs to treat Alzheimer’s disease, Type 2 diabetes, rheumatoid arthritis and, drum roll please, lupus

You can read the entire article here, but all I needed to here was that out of all of the diseases is the whole wide world, this group decided that lupus was one of the four diseases that deserves attention first. If that isn't a move in the right direction - I don't know what is!

Of course, reading the article brings to light the complexity of trying to target a drug to treat a disease like lupus, as illustrated by Dr. Michael Lockshin, co-director of the Mary Kirkland Center for Lupus Research at the Hospital for Special Surgery in New York. I had the honor of speaking at an event at HSS a couple of years ago, and if there's ever a place dedicated to figuring out how best to treat and manage lupus, it's the folks at HSS. 

Dr. Lockshin says, "The key to lupus may hinge in part on answering three questions: Why is the ratio of female patients to male patients nine to one? Why is the ratio of black patients to white patients three to one? And why does the disease strike women primarily between the ages of 15 and 35?" 

Such characteristics may imply that there is “an exposure cause,” Dr. Lockshin said. 

“I don’t deny that you might be able to control some aspects of the disease” by targeting molecular markers, Dr. Lockshin said. “But to eradicate it completely, you will need to go into other fields.”

It IS curious...and worth exploring. Here's hoping every research dollar available goes to uncovering the most effective lupus treatment ever! 

Wednesday, February 5, 2014

Continuing to taper, while staying strong at the doctor's office

It’s time for another installment of “My Fall Lupus Flare”, which has unfortunately morphed into “My  Winter Lupus Flare”. But that’s okay. That’s why I have this blog…and all of your wonderful comments, emails, and questions. To remind myself that I’m not the only one who’s had a flare that’s worn out its welcome, lasting a month (or three!) too long. This, too, shall pass – and I’ll just plan on writing about it as I wait…patiently. 

Over the past few months, I’ve given you details about how my flare began back in August, and about how well I was feeling by October. I then recounted the unfortunate events in November, which set back my holiday plans in December. I also mentioned the fabulousness of the symptom reprieve I experienced in January. And now it’s February, and I owe you an update. Or maybe I owe myself an update. Or maybe it’s just time to talk about where I may be headed in March. In any case, here’s where I am:

About a week before Christmas, I saw my rheumatologist. He listened intently as I explained that I’d almost completely tapered off my increased prednisone in November, practically arriving at our goal of 5mg every other day. I then described the Thanksgiving fiasco, and the terrible joint pain and swelling that ensued. He nodded his head as I told him that the pain was too debilitating, and I’d been forced (with his blessing) to go back up to 10mg, which is where I’d been for the 10 days leading up to my appointment. He then conducted a physical exam, asked a few questions, and answered some of my concerns. He then told me that he thought we should try something new for the joint pain, since the prednisone and increased plaquenil weren’t working. He felt I was on too much of both as a long-term solution, and suggested methotrexate. And I just sighed.
I didn’t want to try a new drug. I didn’t want to change up the regimen that had been working for the past several years, albeit with a bump here and there along the way. I didn’t want to do new research, deal with new side effects, or change the way I handle my meds. I especially didn’t want to give up my current regimen when I’d been so close to my goal  - only to have a single week in November set me back to the beginning.

Although I didn’t tell him all of that, I did tell him that I wanted another shot. I wanted to try tapering off prednisone one more time over the course of the next three months. I told him I thought I could do it, that I’d just had a bit of a setback, and I was fairly confident that my body just needed another few months to return to a place of stability. 

He looked at me, blinked a few times, and said, “I don’t understand what you’re saying. You’re not even speaking English.”

Now – if it had been any other doctor, and if I’d had a couple less years under my belt as a lupus patient, I probably would have burst into tears. I might have even dismissed my idea completely, too shaken, frustrated, or both to repeat it. But I didn’t. Not with my rheumatologist. We’ve been through too much together for me to get thrown off by something like this. And I wasn't going to just let it slide, either. So I took a deep breath, put on the best “doctor speak” I could, and explained my situation. Again. Clearly, concisely, and with as little emotion or extraneous information as possible.

And he bit. He said something like, “Okay, so you want to get through the holidays on 10mg, and then start tapering down after that. You think that once things settle down at the beginning of the year, you’ll be able to taper off the prednisone successfully.”

I smiled, trying not to smirk, and said, “Yes. That’s exactly what I’d like to try. And if it doesn’t work, then methotrexate, here I come.”

He said that sounded fine, set up a tapering schedule for me, and planned for a follow-up a few months out. He said to call him if the tapering didn’t go well, and I mentioned that I had an annual opthamolgist appointment set for January. He said he’d look for those results, since that report might make the decision for us regarding the current medication regimen anyway (i.e. if the plaquenil is affecting my eyes, as it has in the past.) We ended the appointment well  - both on the same page and with a plan in place.

So here I am – mid-taper. I went from a total of 3 weeks on 10 mg, to 3 weeks on 7.5mg, to my present dosage of 5mg per day. I’m doing okay. Not great, but not awful by any standard.

I have joint pain and swelling almost every morning, which lasts anywhere from an hour to 4 hours after I take my medication. It’s not debilitating joint pain every day, where I can’t get out of bed, but it definitely inhibits my activities for the day. Some days, once the medicine kicks in, I feel good as gold. Other days, the swelling and joint pain return and I go to bed in the same crummy shape I woke up in. Again - it's not completely unbearable, but it's not quite up to my standard of living well. 

So I have some homework to do. In an upcoming post, I’ll detail my plan of attack regarding methotrexate, assessing my joint pain, and figuring out where to go next. My work's cut out for me - looking within and reaching out – and I’ll fill you in soon!

Monday, February 3, 2014

Managing lupus expectations - fine tuning your verbiage

When my mom and dad were visiting at the end of last summer, Bernadette was just beginning to show signs of giving up her afternoon nap. She was definitely not sleeping a full two hours every day, and on some days, it was a crap shoot whether she'd make it in her room even half an hour. We eventually found a happy medium, and you can read about that here, but you know how it goes. When you're transitioning with a little one, it takes some time. And usually a few tears.

As is usually the case when grandparents are in town, they take over the role of afternoon babysitter so that I can still get my nap, and they can spend as much time as possible with Deirdre and Bernadette. Our daily routine went something like this: Bernadette and I would head upstairs for nap time, and Papa and Deirdre would remain downstairs, playing quietly. (If I remember correctly, they actually feigned napping preparations, as if they were setting up the couch and chair so that they could "nap", too.) And then I would go to sleep, and whatever happened, happened. If Papa didn't hear from Bernie for an hour or two, it means she slept. If after 20 minutes she started fussing and crying, it meant it was pretty much a no-nap day. I wasn't going to ask my dad to try and negotiate with a non-napping two year old, so his instructions were to bring her down, to avoid an all out temper tantrum.  And it worked just fine.  Bernadette wasn't an absolute terror when she didn't nap, and Dad was a real trooper.

Trouble was I never knew whether to tell him to hope for the best, or expect the worst when she went down. I mean, which is better? To think positively and hope that Bernie rests quietly for 30 - 60 minutes, or to assume that she'll throw an immediate fit and not nap at all?

I've tried expecting the best - and that can set you up for serious disappointment. But I've also tried assuming the worst - and that can be equally as devastating. With the latter, you're not even giving yourself (or Bernadette) a chance to succeed. So I say hope that she'll sleep, but plan for her to get up sooner than later. The old strategy of "hoping for the best, planning for the worst" seems to work the best.

I've found the same to be true of my days with lupus, too. Since I'm currently experiencing joint pain and swelling daily, every evening when I go to bed, I have a choice to make regarding the next morning: plan on symptom reprieve, or symptom activity?  I found that hoping for the best, planning for the worst strategy to be spot on.

Hoping for reprieve allows me the opportunity to detect even the slightest improvement the next morning. If I think positively, as in "Tomorrow, I might just see an improvement in my symptoms", I get good energy flowing, open up my mind to the idea of my symptoms subsiding, and allow myself to envision that a reprieve is coming. Even if it's not exactly tomorrow, thinking positively keeps my hope alive. At the same time, I've found it's important to plan for the opposite. Even if I'm hoping for the best, I need to manage my expectations so that I'm not left with a plateful of activities that I then have to cancel. The best thing that could happen? I clear my schedule of unnecessary to-do's, and when a surprise burst of energy comes mid-day, I celebrate the fact by fitting in a little something extra.

Positive thinking. Realistic planning. That's what's working for me today!