What-ifs addendum

The light bulb went on: I think I am experiencing some Prednisone withdrawal symptoms. I went from 80 to 60, and then 60 to 50 without thinking anything of it. But maybe 50 to 40 (which is happening this week) is my tipping point. After my little episode yesterday (a panic attack and crying outburst over a slight fever and some muscle soreness), I looked up symptoms of Prednisone withdrawal, and lo and behold, found: fever, muscle soreness, mental changes, and 'general ill feeling'. That'll cover just about everything that's ailing. I feel better being able to blame my hypochondria and emotional instability on something. It's not me, I swear. Chalk one up to experience and disregard yesterday's post.

The what-if's

1) It's easy to take feeling well for granted. When things are on the up, life is good.
2) That said, I hope I never forget the low points. They provided perspective on what's important in life, empathy towards others, and gratitude for small things that we would otherwise miss.

However, I do not wish to re-experience the way that I felt at the onset of this disease. I had one of those "one step back" kind of days today, and it's amazing how quickly feelings like fear and anxiety can activate. I woke up with a little bit of nasal and chest congestion, as well as a fever. Nothing I can't get taken care of, right? All I had to do was get in to see my GP and then nap the day away. But for some reason, I felt panicked, and embarassed myself by breaking down at work and then in the doctor's office. Why the tears? Prednisone? It's nice to blame it on drugs, but then again, there's no reason that I shouldn't be able to handle something like that.

The second source of health-related anxiety is some muscle soreness. I have been working out fairly regularly, and haven't experienced much soreness related to it. Yesterday I did a dumbell workout with a BOSU, which is half of an exercise ball on a flat base. It causes instability when you stand on it, activating muscles in different ways. I also aqua-jogged for 30 minutes. Today, I am abnormally sore in multiple muscle groups in my legs, arms, and back. I hope to heaven that it is the result of this workout. Although it was a little different than my usual routine, it wasn't at all strenuous, so I am worried. I mean, really... sore from 10lb dumbells and aquajogging?? This whole thing started with the sensation of post-workout muscle soreness, but in the absence of a workout. I just reduced Prednisone from 50mgs to 40... what if the disease is creeping back in? What if the Methotrexate stops working? What if I stop getting better? What if I get worse?

It doesn't take much to let the what-if's creep in.

Is this a blog or a Gatorade commercial?

I realize that this blog has become a little sports-oriented. I don't mean to portray the loss of athletic pursuits as my main concern with this disease. However, I think that the nature of myositis (the way that it attacks your muscles, atrophies your body, and causes extreme weakness) places it saliently into this context. This disease makes me acutely aware of the physical capacities that were interrupted, and I am that much more focused and obsessed over those capacities relative to other parts of me that aren't as affected. Of course I am many more things other than "athlete", but when the idea of being an athlete is in jeopardy, it becomes important to hang onto. I hope I don't come across as having an over-inflated ego or anything. I am an athlete because I love it and it makes me feel strong and alive, not because I am any good. It doesn't matter why you call yourself an athlete, or who acknowledges you as such. Horton & Mack (2000) found that the extent to which people identify themselves as athletes isn't related to performance or medals, but was more intrinsically motivated, from within. In other words, being an athlete can be just as meaningful to the lowly mid-packer as it can be to the winner.

I talk about running alot because it's a story thread that relates strongly to the physical effects of this whole experience. Perhaps I am using the concept of "athlete" as a character of myself that is trying to make a comeback. Am I more of a fighter because I am a runner? Or vice-versa? How much more of a fighter am I than any other person would be in this situation? Maybe none, but placing my recovery in this context and giving it this storyline seems to help. It gives me something to focus on, something to root for. It gives me a meaningful role in a story that otherwise doesn't make any sense. Think about it: how poignant are sports movies? Who doesn't enjoy rooting for the plucky underdog striving against the odds to achieve some dream/goal/victory? (am I really a plucky underdog? That would be a fun role. I wonder who would be cast to play me if this were a real movie...)

Purgatory

I often feel like I am in the earthly equivalent of limbo. I'm not so sick anymore (thank goodness) where nothing else seems to matter, where your world exists only in your body and the few feet around it as you fight for your life and health with everything you have, and everything else is trivial and will be there when you get back. However, I'm not well enough to feel like the old self that I know, to endure the knocks of the daily grind in all of their simultaneous frustrations and pleasures. I don't feel spunky, in charge, or confident anymore. (This is a metaphor, although I do still have a limpy walk), I almost walk with a slumped shoulder rather than a bouncy stride, kind of like I have to save the bounce for when I'm all better, like I don't deserve it just yet. It's like the physical weakness seeps into your personality and chutzpah, and steals strength from that too. (I am a Libra, who are pleasers by nature), but I feel like I have become more meek, because it seems strange to try to assert myself when there is no physical strength to back it up. I have always been so sure of myself physically, and when this leg of the table is removed, the entire structure suffers. How do people presented with a physical or emotional setback make their comeback, not just with the issue at hand, but with the ripple effects that overtake your other dimensions?

I hate feeling like I am wasting daylight waiting to get "all better". Sometimes I am so relieved to cross days off of the calendar, like all I want is for time to go by so that I can get on the other side of this canyon. But there is alot of life to be lived even when it's not perfect. What am I waiting for?

Unintentional Comedy

I don't know how funny any of this is. Probably not very if you're not reaching hard to find the humor in this like I sometimes do. I have stumbled across a few body oddities that reinforce the feeling that I am somebody's 6th grade science fair project gone haywire. So, from the files of "you have to laugh at this stuff or you'd cry your eyes out"...

I have experienced muscle atrophy just about everywhere, one place being in my rear end. As a result, I have extra skin that gravity places right in the spot where my butt cheek meets the back of my leg. This skin folds over when I sit, compounded by more-pronounced-than-usual bones that dig into the chair. I therefore have to reach down and adjust the extra skin fold under my cheeks when I sit down, which must look awkward and a little socially taboo, kind of like a baseball player who can't keep his hands off of his crotch.

Due to either Prednisone or immune suppression doing double-duty on my alopecia, I am experiencing hair for the first time in several years. It's freaking me out. It's on my head, although about the equivalent of a newborn's in quantity and thickness. That's the fun part. However, it is also growing out of my nose at an alarming rate. Right up there with nails on a chalkboard is the stinging tears reflex you get when you pluck a nose hair. Speaking of plucking, I have eyebrows for the first time in a long, long time. They are starting to get unruly, but I don't know what to do. I'll have the tweezers in my hand, ready to pluck, but it just seems to go against everything I've felt in battling alopecia for so long. Why would I pluck an eyebrow when they're all I've ever wanted?

Experimentation with hair removal has also been interesting. I have tried Nair-ing my mustache and beard a couple of times, but there is a problem with this. The hair does a nice job of covering the acne. I am faced with a decision. Beard or pimples? Why do I even care with a unibrow that I can't bring myself to pluck and small forest growing out of my nose?

Ah, the world of bum-adjusting and facial hair removal. It is kind of fun to say, "I'll have to call you back, I'm Nair-ing my beard right now". (true story)

As measured by the CK enzyme...

... the disease is out of my body.

I think. Is it an accurate assessment of the CK reading to say that if CK's are normal, the disease is not in my muscles doing the destruction that leads to the dumping of CK's into my bloodstream? If so, then rock on. My CK's measured at 64 this week. I have 2 thoughts related to this measurement:

1) Sweet. I feel pure somehow, more authentic. The disease is some kind of unwelcome houseguest in my body, and I want it gone. I'm building myself up, rather than fighting something that's tearing me down. I also appreciate the feedback that I really am doing well with this... it's hard for me to tell sometimes because the physical damage is so great and I still feel nowhere near normal or healthy.
2) The last sentence of that thought segues into the next about the 64 reading, which I discussed in my last post. If the disease is out for now, then what can I expect to experience physically? I still feel very dysfunctional. I still have alot of lingering symptoms that I would love to get rid of. Why? After the disease is stable and we successfully keep it in remission, and I work my tail off to regain strength and function, what if I still feel like this? I feel like I'm not as excited as I should be. Kind of like a "is that all there is" feeling after Christmas or something. Hm.

I do know that the CK enzyme levels can go right back up at any time, if the drugs stop working or if the disease triggers again. That's autoimmune for you. Perhaps that's another reason that I'm not ecstatic about a normal reading. It will mean much more if it stays stable for the long term. This is an instance where I have read too many horror stories to really feel comfortable yet... others have posted that they worked for years to get the CK's into "remission", and then 3 months later they're right back where they started and have to go through the whole thing again. I'm still on some pretty heavy doses of Prednisone and Methotrexate as well... nothing's getting back into this body for now, but I know that it will be a precarious situation as I try to come down from the drugs. So, 64 is good for now. Gotta keep it there for a long, long time. Can't start celebrating at mile 2.

Late nights

It seems as if sleeplessness has returned... so blogging resumes. I have been sleeping well lately despite the Prednisone, but the last several nights have turned into a pattern of insomnia. Come on, sleep, don't leave me now.

I had a rheumatologist check-up this week, and the visits seem to be falling into the following pattern: we chat about how I'm feeling, discuss symptoms and side effects, he asks me questions about what kinds of things I'm doing in my daily activities, I ask him questions about the disease, he does some muscle strength testing, and then I go to the lab for bloodwork. We discuss drug adjustments, I get prescriptions renewed, and then I'm off to ponder what just happened. As usual, I come away with mixed feelings. On one hand, the doctor seemed extremely pleased with my progress and said that recovery is going remarkably well. He indicated that I am gaining a good deal of strength, that I am doing it fairly quickly, and that I am ahead of the curve. On the other hand (not to be ungrateful about positive feedback), if I'm doing so well, then what in the hell kind of miracle has to happen before I'm better? A pat on the head and a glowing report don't really make me feel any different. I mean, I'm still weak (I'd say about 50% of normal capacity), I'm stiff and sore, I have some messed-up joints, and I look like crap. Ok, ok... I know that this disease takes 2-3 years to coax into stable remission (if you're one of the ones for which remission even happens), and I've only been receiving treatment for 4 months. Patience, I know. I've heard it again and again. If the doctor tells me to be patient one more time, I'll likely kick him in the shins and blame it on the steriods.

I will reduce the Prednisone to 50mgs/day for the next 2 weeks, and then to 40mgs. I don't have my CK levels yet, but I would think that they're getting pretty close to normal. One of my questions was regarding the cause of residual muscle weakness once the disease is "out" of my muscles as measured by the CK levels. The answer I got is that muscle is difficult to build back once destroyed, and once you add the ravages of disease and Prednisone, that it becomes even more difficult. I liked this answer because I interpreted it as "disease-be-gone". I don't want to imagine the disease inside my muscles like some kind of demon or parasite. If I'm weak, I want it to be my own body that needs some coaxing and care, not some invader that's stealing my life and strength. Of course, the irony of this thought is that the disease isn't foreign at all... it's my own body doing its best to kill me.

A word about friends... Polymyositis has starkly revealed the fragility, unfairness, and morbidity of the human condition. However, it has also illustrated sweetness and beauty that we often forget about in the day-to-day minutiae of life. I have seen the absolute best brought out in those around me, and am amazed at the human capacity to care and love. I am blessed.

My God, am I still awake? I was hoping that some thought-purging would knock me right out. Did I mention that I have been told that I will most likely be on Prednisone through the end of the calendar year 2009? Ouch.

Functionality

I've gotten a few questions from people who don't see me on a regular basis regarding what my daily function is like these days. It's really pretty good considering where I was a few months ago. I am able to:

• Live independently in my house and do basic chores such as cooking, cleaning, inside-of-the-house stuff. What I can't do are things like operate a weed-eater, get on a ladder, get on my hands/knees to dig in the yard, etc. So independent living: yes, but I still need help with household stuff beyond basic chores.
• Transport myself fairly effectively, both on foot and by car. My legs are the strongest part of my body, and I am walking to work (about a 1.25 mile trip each way). When I am on my feet, I look strong and almost normal. I am much more defunct once I am off of my feet... it's as if my legs provide much-needed leverage for other activities, and when you take them out of the equation, those activities become more difficult. For example, I can walk for miles at a time, and on hills, but it's still difficult for me to haul my own body weight up from a lying position. It's a little bit of a paradox, if you don't understand what's going on. Basically, the disease weakens the muscles closest to the core of the body more so than the ones further out, hence the strong legs but weak body.
• As just mentioned, I am driving. I just started this within the last few weeks. I started driving around town, and have ventured on the interstate a couple of times. I haven't traveled anywhere out of town yet, though. Am hoping to go somewhere before the summer is over.
• I am working full-time. I often feel like I am not quite able to handle my ordinary workload, especially when it comes to the more physically demanding tasks like maintenence. I also still feel like I am experiencing a little bit of the holdover from last semester when all of my work got delegated, so when I finally came back, I felt lost. But we are in summer mode now, and I am hoping that during this time I can re-set, re-engage, and feel 100% in my normal capacity by the time the fall semester rolls around.
• I am getting out socially, but not as nearly as much as I would usually be. I am still very physically uncomfortable, primarily on the Prednisone (I hope, and not the disease), so outings are not as enjoyable as I would like them to be. Plus, I am trying to take very good care of myself... eat well, drink less, rest when it's time to rest, stay out of the sun, don't engage in any situation where I could get hurt (remember the dog bite?), etc. So, I am a little bored socially, but my friends are wonderful and do a good job of making sure that I am included in social situations as much as I want to be.

I am hoping that by this time next week I will be reducing Prednisone again, and I anticipate an improvement in quality of life with another reduction. If I could get rid of this eye pressure, speech mania, and joint pain, I think that I would enjoy outings a little more. I'm not sure if going down to 40 mgs will do anything, though... still a pretty high dose. I'll let you know what 40 feels like, hopefully I'm there soon.

The activities listed here are primarily what life consists of these days. I feel like I have reverted back to fundamentals like self-care, work, and making sure that I am in close contact with family/friends. I don't have nearly as many irons in the fire as I usually do, and most of my energy is focused on trying to get well. My world seems pretty small these days. I know that it's what I need to do to take good care of myself, but it contributes to that "left behind" feeling that I've described before. I love being on-the-go and doing it all, but sometimes we just can't.

Anticipation

I count down the days to doc appointments like I'm 5 years old and it's Christmas. I crave the feedback and cling to it until my next appointment. I try to think very hard about any questions that I want to ask. Of course they always pop into my head at random moments and by the time I'm organized enough to write them down, I've forgotten. Some things that I want to ask this time are:

• Could adjusting hormonal birth conrol have been a factor in triggering the onset? What, if any, are the ramifications for taking it in the future? Could it, or is it ever used to regulate autoimmune/chronic inflammatory disease issues? (this is just heresay, but I had someone tell me that they know someone who uses birth control to regulate fibromyalgia. I also had someone tell me that they used antibiotics for PM. I asked about this last time, and the doc didn't acknowledge this as a viable treatment that he was familiar with.)
• If my CK's are any lower than the previous visit (550), how close will I be to "remission"? What is remission, and what factors constitute it? If, in fact, I am within a "normal" range with the CK's, what next? It can't just be all about the CK's, because my body is still weak, stiff, and has some locked-up joint issues. Basically, once we get CK's to a normal level, what does that mean and where do we go from there?

I know I'll have more, and would appreciate suggestions for other questions.

There are some smaller, lingering symptoms that I want to mention. It's hard to remember what I've reported in prior visits, especially when I've been more concerned about the bigger stuff, like enzyme levels and functionality. Just want to make sure that I report some of the smaller tweaks that I notice, such as:

• tingling in back and feet (especially after exertion)... I experienced this at the beginning, and I still notice it.
• Red/pink splotches on my knees that come and go. Not like a rash, just a bright color change. I do have a minor rash on my knuckles, probaby just a little crossover of DM.
• My voice has never really come back to normal. I have a nasal/throaty sensation, like too much air is coming up through my throat and nose when I talk, and it's really annoying. Other people say they can't hear it, but it bothers me. I sound a little hoarse and nasal when talking, and my singing voice is definitely poorer.

On a completely different topic, I am not embarassed to admit that I like the Miley Cyrus song about the mountains. Who of us can't relate to climbing mountains as a metaphor for life's struggles? It's a catchy little tune, and the words are corny enough for me to close my eyes and think of them as a mantra as I'm spinning on the elliptical trainer at resistance level 3 (out of 20) with everything I've got. Keep on moving, keep on climbing... sing it, sister. I'll keep spinning.