Year in review

Well, in the spirit of celebration and milestones, it's been about a year since I began to get very, very sick. Let me tell you the story. No, too long. Let me sum up:


November/December 2008: Began falling alot on trail runs. Initially chalked up to clumsiness, but hindsight gives me something to blame it on. Didn't realize it at the time, but was getting weak. Ran Memphis marathon on December 5 and never really recovered. Felt tired, weak, and sore all of the time. Thought I was coming down with the flu, or having some recovery problems. Had trouble doing basic exercises like pushups and ab work.


January 2009: Slippery slope. At beginning of month, could function for the most part. Was trying to run, go to work, etc., although feeling down. Fighting losing battle. As the month went on, got weaker by the day. By the end of the month, couldn't lift my arms over my head, couldn't pull items off of shelves in my kitchen, couldn't dress myself. Started wearing the same clothes for several days in a row. Barely walking.


February 2009: White flag up, I surrender. Can barely walk or stand/sit on my own. Head won't lift off of pillow. Dangerously close to not being able to take myself to the toilet. Need serious help. Got in to rheumatologist. CK's 10,000. Had muscle biopsy in left deltoid, positive for Polymyositis. Began steriod/methotrexate regimen.


March-May 2009: Most days spent in extreme weakness. Waiting for drugs to do their work, trying to build up strength through exercise. Alot of time off of work, glad for my employer's support and flexibility. Family and friends helped me remain independent, drove me around, cooked, cleaned, and spent time with me. Awash in fear, gratitude, heartbreak, and anticipation.


June-August 2009: Good enough to function with normalcy in daily activities. Exercise progressing, especially strength training, helping immensely. Running more and more. Starting to look like myself again: gaining weight back, muscle tone and skin color improving.


September 2009-present: For most purposes, feel "normal". Am close to doing all of the activities that I enjoyed before. Have done some challenging physical activities such as multi-day running/camping trips, and a few longer runs. Ran some satisfactory 10K times. Still feel some symptoms: occasional "tired" or "heavy-feeling" muscles... some days I feel like my legs are churning but I go nowhere, cartoon-style; pain in my quads; hands still stiff and missing some range of motion. I get sore from activities more easily now, it takes me a little longer to recover. Have tapered prednisone to under 10mgs/day, so a little nervous about the next several months. Still on high Methotrexate dose, my liver flirts with high enzyme levels occasionally. Planning on doing some spring racing, notably the Sylamore 50K and Boston Marathon.


It took about 6 months to become functional in my usual roles, and another 2 or 3 to put the cherry on top and really engage in my favorite things. At this point, I am pretty satisfied. If I were to "be" like this for the rest of my life, I would consider myself lucky. However, I'm pretty sure it doesn't work like this. I get nervous every time I feel a little weary or experience some muscle soreness. After each drug reduction, I experience a few days of weakness before I feel my own strength picking up again. Somewhat like the sensation of flying... at initial takeoff, you dip just a little bit before you feel the thrust carry you upward. This sensation scares the hell out of me every month when I take one less pill. When my fingers get too cold, I wonder what kinds of organs/tissues my immune system is raging against at this very moment. When I notice my eyebrows get a little thinner, I wonder if or when Polymyositis will adopt the same permanence in my body that Alopecia has.

I have become very interested in autoimmune disease. Most reasons are selfish... obviously, I'd love to see research breakthroughs that might enable me to live a long, healthy life without having to go through roller-coaster cycles of disease flares, each time leaving your body a little weaker and more damaged. But also, when you look around, you notice people with these diseases who are all fighting; each battle epic, each flare a physical and emotional trial. There are so many of us out there.

So many trails...

Here is a video clip that my friend made after a trail-running trip to the Smokies during the long Thanksgiving weekend. That's right... I took a trail-running trip. My friend and I did about 50 miles through various parks in central and eastern Tennessee. The highlight was the 2 days we spent in Great Smoky Mountain National Park, which is where the snowy portions in the video are.

I had a Rheum appointment a mere 3 days after returning from this trip... and believe it or not, my CK's were normal.

http://www.vimeo.com/7954780

Inspiration guaranteed.

Velvet Jacket

When I was down and out earlier this year with Polymyositis, one of the simple pleasures that I really missed was being able to wear real clothes. As in, not the extra-large sweatpants and t-shirts that were all I could wriggle into with such limited movement. What's the point of wearing real clothes anyway, when you never leave the house and feel like you live in purgatory-on-earth? In a fit of sweatpants-backlash, I ordered a pinkish/orange velvet blazer from J Crew. I think the actual color title was "roasted red pepper", true to corny catalog copy. It's fitted, tailored, and perfect with trouser jeans and tall boots. I probably never would have bought it if I hadn't been feeling sorry for myself and wanted something that screamed "opposite of sweatpants!". It was worth it.

I read an article that discusses the use of symbolic elements to assert desired traits and group membership. My velvet jacket means that I am human again. I can dress myself. I have places to go. Same with those half-tights I bought a few months ago. I'm a runner, watch me fly. There's no place for half-tights in the sick world. And the GPS that I'm contemplating getting myself for Christmas would mean that I'm rugged and outdoorsy. Trailblazer! I see the pattern now. I think advertising professionals figured this out a while ago. Well-played...

Still holding up

End of October... not much to report in terms of the PM. Since last time, the Chile Pepper 10K came and went. It was fun. I felt strong and fast (ok, as fast as you can feel after you go out too fast in the first 2 miles and then try to hang on), and finished about where I usually do. 10K's are a tough distance... they're too short to get into a comfortable rhythm, but too long to sustain an all-out effort. Anyway, 6 months ago I didn't expect to finish where I did. I wondered if I could be happy doing events again without the feeling that I was "racing". But this resignation didn't have to happen. I felt legitimate: I put myself out there according to the ability level that I'm accustomed to, without any handicaps or caveats. It feels good to be a player again instead of a spectator. Now, on to endurance.

Am fighting my second head cold in as many months. They don't seem to be severe, just annoying and lingering. Don't know if methotrexate use has any influence on this situation, or if it would have happened anyway. Dipping to 9mgs of prednisone for the month of November. I take 12 pills a day. Wow. Ok, only 8 on non-methotrexate days. Still... they take up an entire drawer in my kitchen. I haven't had a single flare since I started tapering, just a little bit of a withdrawal syndrome where I had some fevers. Doc seems to think this is pretty incredible. And warned me to not get too used to such a smooth drug taper. Duly noted. I really don't perceive prednisone side-effects anymore, so I'm not as anxious for reductions as I was during the earlier days. In fact, I'm a little nervous as the pills get smaller and smaller. So far, so good.

Kickball

Ok, so adult league kickball is hilarious. The best part: I kicked, ran, threw, and in general, acted like a 12 year-old.

The downside: I am not 12. I was more sore than I have been in a long, long time. From kickball. Initially, I had a little freak-out. A downside of being constantly active is that I never know whether I'm sore from the activity or whether something wierd is happening with the disease. A few days later, I'm feeling better. Still sore, but it's working itself out. Crisis averted. A little embarassed, but relieved.

Alopecia

While we're at it, I've decided that I'm not done talking about alopecia. I was recently asked why I'm so open with it. The answer was simple: it's kind of hard to miss. Aside from simple visual logistics, though, there are other reasons. In order of lighter to deeper...

1) I can do the things that I want to do much more easily. I can sweat and get dirty without worrying about it. I can hang my head out of a car window and feel the sensation of 50 mph on my face. I can jump into the river/lake/pool whenever it looks good. I can get ready in 15 minutes.
2) It feels good to be open. I always felt like I was hiding something by wearing a wig. No more shock and awkward explanation when you find out that I'm *surprise!* bald.
3) I sometimes feel that it endears me to others. Most of us have some kind of imperfection, insecurity, flaw, issue, or whatever. Mine happens to be out there in the open. It's obvious that I'm a little different, so it's ok if you are too. Tell me about it. I might understand.

One reason (among many, of course) that my muscles and athletic pursuits are so important are that they give me confidence. I didn't always feel this way about alopecia. I used to think that it ruined my life, that I could never be truly happy because happiness meant that I had to have hair. But age, experience, and wonderful people have taught me otherwise. And it turned out that validation and self-worth come from way better sources than hair. I grew to be confident without it. Being good at sports helped. So, you see, I need my muscles. I'd have to start all over again and find something else to make being bald not so bad.

September 09

I have a cold this week. No big deal, hopefully. This will be my first cold on immune suppression. I had an infection back in April, which came on quickly and severely, but which went away just as quickly once I took an antibiotic. We will see.

I am trying 10 mgs/day of prednisone this week. I'll hold here for a few weeks until my next appointment. I still perceive eye pressure, which has been one of the most prominent side effects that I have sensed. It isn't as severe or constant, but when my awareness is brought to it, I can feel it. I am starting to lose the hair that steriods put on my head... it's strange. My eyebrows and eyelashes are thinning already. That didn't take long. The alopecia rages on. I thought maybe my immune system being turned down would hold it for a little while, but it doesn't seem to be the case. I am a little sad. I sometimes blame being bald when things feel like they're missing in life, if I am feeling lonely or un-pretty. It's not so bad, though. Everyone experiences these emotions sometimes, and I lead a charmed life, not in spite of alopecia, but often because of it.

I started physical therapy to restore range of motion in my fingers, hands, wrists, elbows, and shoulders. During my onset, I had some clawing in my hands and my elbow joints flexed inward. I gained some extension back on the steriods and once I started moving more. I have loosened considerably, but not entirely. I may be wrong, and I hope so, but I get the feeling that this might be a lingering, perhaps permanent issue. It doesn't hamper my functionality, it's more of a comfort issue at this point.

I am running about 20 miles per week, and trying to mix in some speedwork. I get sore frequently, I find myself wondering every time if it's me or the disease. I don't remember feeling muscle soreness this often before the disease onset. More fodder for self-imposed mind games. Despite muscle soreness, I am enjoying a nice rebound of strength, speed, and endurance. Of course, I haven't come close to really testing myself, and it will be a long time before I feel comfortable enough to do this. I still feel that something is "missing" (hard to quantify, which is strange because I am a very empirical person). I am a little nervous moving forward beyond 10 mgs/day of prednisone. This is tricky and uncharted territory... this is where the disease likes to flare. I am ready to dive in, which is easy for me to say while I'm feeling strong.

Life is good today. I find myself worrying about everyday issues such as writing my dissertation, minor work stresses, and missed training during this cold. These are the wonderfully mundane worries indicating that life is moving on, and I am able to move with it. Please, please, let it hold.

Kinesthetic memories

I remember saying this past spring that I wanted the whole onset of PM to be a bad memory someday. Well, regardless of what tomorrow brings, I can confidently say that today, it actually has become somewhat of a memory. By this, I mean that I actually tried to reach back and remember what it actually felt like to not be able to get myself out of bed, on/off of the toilet, or reach my own feet or head. I don't mean remembering what happened and what the experience was like (that part is vivid), but remembering the actual kinesthetic sensation. What it actually feels like to not be able to utilize your muscles. It's more difficult than it sounds, kind of like the way that you can only remember what it feels like to run a marathon by running another one, and then wondering why you felt the need to revive that memory in the first place. Can you remember how it feels to:

• Try and raise yourself with your arms from a lying position? Who ever knew that your body weight was too great for your arms to support? How in the world did you get stuck on the floor beside the couch when you tried to get up but your core muscles didn't work, and your arms were too weak? You plopped back down, facefirst, and now you're stuck. The only way is to roll off onto your knees and hope that you can pull yourself up somehow, which is a risk because if you couldn't get yourself off of the couch, how in the hell are you going to get yourself off of the floor? You could just wait for your next visitor to come over and hope you don't have to pee before then. As you can tell, I'm an expert on strategy. I tried to raise myself out of the pool this afternoon, a simple move that is upper body strength-based. I still couldn't do it. Thought I was going to get rescued by a lifeguard for a second there, not too far off from my mother having to pull me off of the floor the first time I attempted the aforementioned "rolling off of couch onto knees" technique. The kinesthetic memory came back in a rush. (Points for using the word kinesthetic 3 times in this post, but I like it. Now 4 times.)
• Or how about throwing something small into the trash can, basketball-style? The object only travels a couple of feet and falls pathetically short of the can, even though you heaved it with all your might. Airball. I remember getting some laughs when I did this in a meeting at work. I can actually still remember what my arm muscles felt like trying to perform this specific movement.

Now I mainly feel stiffness and the occasional odd muscle pain. Like I've mentioned before, I feel something almost like guilt over my strength renaissance. I reach for these memories because I don't want to take anything for granted or leave anyone behind. Revelation: I lamented over my lost athletic identity for months. Have I acquired a disease identity? And am I actually trying to maintain it? For what purposes? I'm sure that there are some adaptive mechanisms at work here, if nothing else, perhaps to soften the shock if/when there is a flare or another disease. There is perhaps a social benefit too, such as the desire to reach out to others who need a kindred spirit. How could we be kindred spirits if we put the whole thing behind us at the first chance we get? No, thanks... we need the kinesthetic memories (5!).

Racing season

I previously mentioned wanting to plan some races in the upcoming months. We have had some gorgeously premature early fall weather lately, and I am itching to get into the primo running months that are coming up. I may be getting a little greedy, but here goes:

• Chile Pepper 10K: a challenging 10K on the local university cross country course in October. The goal here is to see how strongly I can run this. I have worked up to some double-digit-mileage trail runs, but am pretty slow. I want to see what kind of strength and speed I can get back. My PR on this course is around 45:00, I have no clue what a realistic expectation is this time around.
• Thinking about going back to Memphis in December, which is the scene of The Last Glorious Running Day that I had last year during the marathon. This event last year felt Flowers for Algernon-ish... the last beautiful ray of sun bursting over the horizon before the world is plunged into darkness. Considering the half-marathon. Again, hopefully by this time I am able to do strong, fast, high-quality miles, rather than simply finishing the distance.
• I have never done the Little Rock marathon. This might be a good one, since I don't see any marathon-distance races realistically happening before 2010. This is an early-March event, just in time to guage preparation for...
• Boston. Mid-April. There were times this spring when I wondered if I would ever walk again. And here I am planning this thing. I can't believe it. I am using words like "speed" and "marathon" with all intents and purposes. This is where I feel a little greedy... my eyes might be bigger than my running shoes. I've been feeling good lately, getting in the groove. I'm asking alot here, this is a pretty ambitious list. Why not let myself get excited over it?

The recovery feels a little tenuous at times, especially when I consider how I've adjusted my goals farther than I often thought possible. Have I overstepped it? Am I setting myself up for another crash? I am nowhere near stability in remission... am still on a dose of steriods that isn't sustainable. The future is a toss-up as I try to lose my crutch of drugs. In the movie Cool Runnings, during that last run down the sled track, the Jamaicans are going fast. They are exceeding everybody's expectations, even their own. They are going fast, faster, faster yet. It's going too well. The runners come off of the track a little bit, the turns get harder to hold. And then we know what happens next...

Another year

First day of the academic semester, 09-10. I'm glad to reach this point. If you don't know, I work at a University and can compartmentalize life & work into the seasons of the school year. I pretty much "lost" the Spring 09 semester: I went down hard with PM in January/February, and then spent most of March and April simply trying to become functional again with the basics such as walking, getting around my own house, and simple self-care. Over the summer, I slowly but steadily gained strength and functionality. I had hoped to feel full-strength and fully engaged by the time that the new school year came. I wouldn't say that I am 100%, but I feel pretty close in this context.
I still don't have much going on in the way of extracurricular activities... I can run several miles at a time, but my ability here isn't very consistent or dependable yet. Some days I feel strong and ready to go, other days an easy 5-miler is a hard day's work. I have lost a little bit of the fire that was under my seat with my training and physical work. At the beginning, I was so grateful to be able to increase my activity, and I could feel myself getting stronger. The pace of improvement has slowed as I have gotten closer to normal, so it feels more like work now, and is a little harder to keep at the grind. I find myself brushing off workouts much more easily now that I'm out of that honeymoon phase. I'd like to get that "edge" back at some point.
I am currently down to 20 mgs/day of prednisone. I have felt tired lately, and a little mentally dull. I am going to chalk it up to drug reduction, which has seemed to be the source of most of my physical tweaks. I am still walking the tightrope, and I often worry about where the disease is... how close the wolves are to the door.
This update is not very exciting, just a check-in. Things are going well. For the most part, I feel a sense of normalcy in life, which is really all that you want when things are so bad with your disease that you can't imagine a normal life again. That's not to say that it comes easily... there is alot of work and planning now that goes into performing daily roles. I still feel a sense of loss with the active, physical part of my self that I would love to get back. I have started to plan some races for the next year, and hope that I can see them through.
Next rheumatologist appointment is in 2 weeks.

More Recommended Reading

I read Donna Jackson Nakazawa's book titled The Autoimmune Epidemic. She presents theory regarding correlation between increased toxins in our daily environments and increasing rates of autoimmune disease. The "barrel effect" is used to illustrate what happens in the body to set up a disease onset. Imagine a barrel filling with water: genetic predisposition fills it to a certain degree, estrogen fluctuations fill it even more, and toxins (referred to as autogens) fill it even further, to the point where the water is just holding at the very top. Then, an otherwise inconsequential trigger (often a common virus that confuses the immune system) provides the final drop that causes the barrel to dramatically overflow. There is also discussion of current lines of research, as well some tips to minimize the introduction of autogens into the body. The statistics presented were interesting: more people will battle an autoimmune disease than cancer and heart disease, yet autoimmune disease research receives a tiny fraction of available resources. Rates of autoimmune disease have spiked in recent years, and not due to better diagnostics. According to Nakazawa, we are poisoning ourselves with our modern environment, but we have yet to make the connection and work towards remedy.

The book is interesting. Some of the discussion regarding disease clusters and molecular dynamics was tedious, but the general explanation of mechanisms involved in autoimmune disease were well-presented. It seems as though we are still a long way off from making any inroads regarding predictors, preventions, or remedies. My onset of polymyositis has reinforced the worry that those of us who already experience one or more autoimmune issues are more likely to experience additional diseases. While living in fear is not the answer, I am acutely aware of my status as a ticking time-bomb. Visit aarda.org for help understanding autoimmune disease, as well as how current issues like health-care and research legislation affect us. There are also tips on how to contact your legislative representatives for advocacy.

Latest Checkup

I mentioned yelling at God on the trail a few weeks back and being frustrated at hearing silence in return. Well, He yelled back in a big way this week. The rheumatologist looked me and stated verabtim, "Your liver tests are almost normal. Your CK readings are normal. This is a miracle. There is a higher power at work here." I am corrected and humbled. I am so blessed and fortunate to be doing so well.

I am running a few miles at a time, I'd like to get some power back into the equation and start running some "strong" miles. I am still lifting weights, and am at about 60%-80% of what I was lifting prior to disease. I still have more noticable deficiencies in certain muscle groups, especially those closer to the core of my body. It remains difficult and awkward for me to get up off of the floor. I still have quite a bit of stiffness and some arthritis in certain joints. However, I am certainly bouncier and more perky. Prednisone continues to bother me and make me unlike myself at times, both physically and emotionally. But good reports mean that I can continue to taper. I started 30 mgs daily and will drop to 20 in a few weeks. I continue to feel an increased sense of normalcy in everyday life.

I still wonder and worry about what kind of cycle this "up" phase is part of. It's easy to get cocky and start taking this feeling for granted. I also acknowledge that I am still on heavy Prednisone, and am cycling through emotional highs and lows. My last checkup was a major high, and I will get frustrated and sad again when it wears off, focusing more on the deficiencies again rather than the gains. What an experience, all of it.

Midnight 50K

I visited one of my favorite runs this weekend... the Midnight 50K near Lake Sylvia, AR. I rode along to the event to:
a) Get out in the woods for a night and enjoy some time under the stars
b) See how far/long I could stay on my feet and what it felt like
c) To see people that I enjoy seeing at these events
d) To see what the sting would feel like

You know, the sting. The pinch. The twinge that you feel in your gut when you are so wistful and longing about a situation that you can't have that it hurts. Like unrequited love.

I run/walked a portion of the course and it felt nice. One of the cool things about running long, especially at night, is the communion that you can sometimes experience with yourself, nature, God, philosophy, your digestive tract, and all kinds of other interesting entities. I got out onto the road with the goal of walking the half-course. The miles started ticking by, and I waited for the conversation with God. I waited for the 'who are you and what are you made of' self-reckonings that inevitably come during the course of a long, solitary night run. But they never came. I even tried to force them, turning off my headlight a couple of times and trying to initiate a vocal conversation when I was alone. But I drew blanks. I didn't feel anything, in fact. I didn't hit the flow. I just shuffled along, and when I came back into the finish area, it was over. I wanted to be back on the course. I must have been looking for something out there, myself perhaps, a spark of some kind. While I had a nice time, the whole thing was a bit hollow. I miss it so much.

I did see good friends, and I am grateful for their support. I realize that I sound a bit "poor me" at times... poor Katie can't win every race, so she's going to pout when things don't go her way. But it's not about that at all. The difficulty lies in the suddenness of a change in a negative direction. Like a breakup... at first, there is a sharp, acute pain. Then there is a little bit of mourning, a wistfulness that you feel the need to wallow in. Just immerse yourself... you want to be sad? Then be sad. Put the old songs on repeat, visit your old places, get your tears out. Visit your favorite races and wish you were in them. Then move on. Find a new role, adjust, make your peace. It's not normal to go through this process without a few tears and alot of brooding... the reason that it's hard to separate from something that you love is because you had such a special relationship in the first place, whatever "it" is for you.

Brothers Under the Bridge

I had a life once. I was right in the middle of it. I was the go-to girl. I was alive in a way that feels like the complete opposite of the person that lives in my body now. I was fast, and tough. And I could go far. Show me the hill and I'd show you my dust. I was fun. Big smile. Playful and joyous. A badass in a running skirt. Knew all the answers. Pretty and confident.

Now I sit and wait. I'm still. I'm weak. I've been replaced by people who have life and strength in them like I once recognized in me. Life moves on, but it's too fast for me now. I smile from the sidelines, but it's fake. I'm so jealous. Jealous of the ones who are in the middle now, and make it look so good. I wait and watch, and want their lives. Will they remember me after they all move on with their strong muscles and fast legs and shiny bikes? Their smiles look real because they're doing what they love and what makes them alive. Their eyes twinkle at each other, but mine feel dull.

I heard a song last month that hit home. It's not about illness, but about neglected veterans. The fall can happen so fast. The song is the title of this post and belongs to Bruce Springsteen. The line is: "One minute you're right there... then something slips."

Gone...

My cardio is gone. An easy 5-miler has become an ugly, painful marathon effort. (Preface: This is where I reconcile the difference between gratitude to be up and on my feet with unwillingness to accept what I've gotten back so far as definitive.)

My cardio is gone. I might as well be trying to run with 4 cigarettes hanging out of my mouth. I have never worked so hard to negotiate a simple tree root. All of the footwork, gone. A small rolling hill is a 5-story brick wall. All of the power, gone. No endurance. This is the work part. It's not like I was all that good before. But good enough to feel wistful about where I was and how I want so badly to get it back. I want to explain to other runners that I meet that this isn't me, that I'm usually not this slow or winded. Why the need to qualify myself? Lance Armstrong had to have felt this way some days when he went out on his bike after cancer. Fundamentally happy to be on the bike, but the immediate experience is painful, frustrating, and leaves everybody pissed off.

That's right, get mad.

How 40 mgs are treating me

I'm happy to report a perceived reduction in a Prednisone side effect that's been bothering me for a while now: the joint pain/stiffness in the knees and hips. I wrote last week that I finally noticed some physical symptoms of withdrawal (fevers mostly) when I made the drop from 50 down to 40 (after being held on 80 from mid-February to mid-May). I'll happily take a little bit of physical withdrawal in exchange for my knees back. I have started walking with more fluidity, speed, and confidence just in the last week or so, and the absence of pain/stiffness is liberating. Ahhhh. However... every other side effect is still here. Oh, yes. Stupid mistakes at work, eyeballs bursting out of my head, speech that makes no sense, sunburns after 30 seconds, etc. I guess I'm happy that the immediate physical ailments that I'm battling right now are drug effects rather than my disease. I mean, the effects of my disease are serious and the damage is great, but they are now part of a long-term rehabilitation project rather than an immediate disruption of my daily activities.
Again, I know that this disease can behave like a yo-yo at any given point in time. I write as if "feeling better" will be my state from here on out. Obviously, I hope that this is the case. But I know that the experiences of many are much more inconsistent. It's been 6 months for me since I started this journey to hell and back, and the disease could very well send me to hell and back many, many more times. I know that I am one of the fortunate ones for now.

Fever

I have experienced a fever like the one I had last week a few more times. I woke up with a fever Thursday and Friday this week and felt pretty bad through the morning. However, it goes away as the day goes on, and I feel fine by evening. I don't know what to make of it other than Prednisone withdrawal. Fun with steriods, I guess.

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.

When I read back through these posts, they look fairly positive. The truth is, I'm over it. Tired of the aches, pains, weakness, stiffness. Tired of the drugs. Tired of not being able to do the kinds of activities that young, healthy, vibrant people should be doing. Tired of not being able to live my life. Tired of being left behind.

And I'm scared to death.

Exercise

I often wonder what is appropriate for exercise. I have been told to exercise as I feel, without overdoing it. My doctor is fully aware that I actually enjoy running 50Ks from time to time, which I feel is disclaimer enough that my definition of "as I feel" might be a little bit abnormal. Nonetheless, I have progressed fairly far in my exercise regimen since the bottom. At my worst, I made it out for a shuffle around the block. I gradually started walking more, then added cardio machines like the recumbent bike and elliptical trainer. I then started adding strength exercises with a theraband and very light dumbbells. I am now fully utilizing the fitness center equipment at work and have built up to the following:

• Strength training about 3x/week. On selectorized machines, doing chest press, lat pull-down, row, bicep curls, tricep push-down, leg extension, hamstring curl, and calf press. Abs on ball. Staying away from squat/lunge type stuff because of the achy knees. For weight amounts, I am able to do 2 sets of 15 reps at about 50% of what I was lifting prior to disease onset. I have been able to watch this increase, which is a great form of feedback.
• Cardio: almost every day, although I will vary the intensity and duration (between 30-60 min, usually). Some days will be a more difficult workout, others will be active recovery. Either a walk (or walk-jog if I'm feeling cocky), spin on bike trainer, or elliptical trainer. Haven't gotten in the pool yet, maybe soon.
• Stretching: I am very stiff. I have used a stretch trainer made by True that we have at work for the past few months. I just attempted to get down onto the floor and stretch there, and it was tough. I can't touch my toes with my legs extended in front of me while sitting on the floor, so I have some work to do here. It's also still difficult for me to get up off of the floor. I have to position myself close to a railing, brace my feet against the wall, and heave myself up. People tell me to try yoga, but I really can't move around on the floor at all.
• Balance: I try to do a few sets of balance exercises standing on a BOSU a few times a week. I never really had a problem with balance/falling, thank goodness. The only falling issues I ever had were at the beginning, before I even realized that I was sick. I had begun tripping and falling on trails during runs. It had seemed to me that my legs just felt heavy, and I was hitting roots/rocks more than usual. In hindsight, I realize that I was beginning to feel some weakness and fatigue that was causing me to not pick up my feet.

Like I mentioned earlier, I am working very hard at this aspect of my recovery, primarily because it's what I know how to do. I enjoy it and feel like it's something that I can do to have some kind of control over my own body, which has made it very clear that at any point, it can snatch that conrol away. I am curious as to what other people do for exercise, what medical research would say is the optimal physical therapy course, etc., and how what I'm doing compares. Am I overdoing it? Maybe. But it feels good, and as long as progress continues to be forward, I am assuming that it's helping.

New pains = uh oh

In the last couple of weeks, my knees have become stiffer and achier. I didn't think much of it until yesterday, when it hit the tipping point and really bothered me. They were also swollen, and my bad knee (that hit the rock back in November) was warm. It was enough to make me worried (which must be the definition of what my 'tipping point' acutally is). I also have noticed a burning/stinging sensation in the tops of my quads lately, and that has gotten worse as well, upgrading to what I would call "pain" on occasion. So far, I would classify my symptoms with words like "weakness" and "discomfort", but I haven't experienced anything that I would describe as actual pain. So these new sensations are strange and a bit worrisome for now. I did some more googling and found that muscle and joint pain can be a side effect of tapering Prednisone. However, these symptoms can also be flares of the disease itself, so it can be difficult to differentiate. Hm. Sounds par for the "who knows" course of this disease. I hate feeling like a chronic complainer. What hurts today? Let me tell you about it ad nauseum because my world has become so small that it's all I have to think and talk about. I cannot wait to rejoin normal society and have a life that doesn't revolve around disease, meds, side effects, complaining about things I can't do, etc.

I wonder if I can continue to walk/jog. I've even been so careful... going out to grassy areas, just a little at a time, and only once or twice a week. Hopefully that didn't contribute to this knee stuff, but I hate taking chances.

Dog bite update: the damn thing got infected and I had to get an antibiotic. Turns out that you can't take Methotrexate while on antibiotics, so I had to push a dose back a week, which sucks when your primary purpose is waiting for the days to go by while the drugs do their work in your body.

But it's not all negative. I really do continue to get stronger, and I can measure it now that I'm lifting weights. As long as I continue to see the pin go into a heavier weight stack every few weeks, I'm happy. I also am starting to see a little bit of weight gain and definition in my arms. Just a little bit, but I think I can detect it. I can't wait to get my body back to a little bit of normalcy. Stick arms, be gone!

Body Image

I guess like most athletes, I'm particular about the fine-tuned-ness of my body, both performance-wise and in appearance. In 5 short months, I look completely different, and I absolutely hate it. The most noticable difference is the skinniness of my arms and upper body, in addition to odd-looking angularity caused by the inability of my elbow joints to straighten. They are still stuck at about a 5-degree angle, so that my elbows jut out and my forearms have the appearance of lifelessly hanging off of the rest of my arm. Contrast this with a Winnie-the-Pooh prednisone belly, and I see something resembling a snowman (complete with stick arms) in the mirror. I'm not completely vain... of course I want to be healthy first and foremost. But it is hard to look in the mirror and see yourself in such a different and wasted form.

Questions that go through my head: How long does Prednisone puffiness stick around, and at what kind of dosages? Will the disease prevent muscle build-up? When can I start trying to build muscle back up, anyway? Rignt now I can only lift very light weights... do I just keep doing this and wait for strength to come back via the drugs? Or is it up to me to try and increase srength with the lifting? What causes the residual weakness that most people experience, and is there any way to work through that? I would love to think that I have some kind of control over how much strength I get back through my willingness to work at it, but I'm sure that there are multiple factors involved.

Update on the dog bite: Scabs have finally formed, it took a few days. One cut looks clean and dry, the other one looks pink and raised, like it's a little inflamed. I hate being so fragile. I can usually get chewed up, spit out, and then show off my scars proudly like some kind of badge demonstrating how tough I am. I am now that person who dampens all of the fun by talking about how I can't get a scratch or be exposed to the outside world. Like Piggy in Lord of the Flies. Ok, that's a little dramatic. But the point is that I'm not used to being weak.

Can't all be astronauts when we grow up

Ok, since it's the Methotrexate dose day, an update on meds: as of one week ago, Prednisone 60mg/day and Methotrexate 20mg/week. Side effects = pressure in eyes, acne, facial hair, and detecting some mania and obsessive/compulsive tendencies such as the desire to re-organize my kitchen cabinets and sock drawer for the 20th time. I am a little puffy in the face and abdomen, but it's really not that bad (knock on wood). The insomnia has also gotten better since I first started the steriods, although I wouldn't say that I'm sleeping well. Sleep is still broken and doesn't feel deep and restful, but I don't lie awake all night like I did at first. I know that the effects are cumulative and build up in your system over time, but I still feel fortunate that I am merely uncomfortable and not miserable, because I know that alot of folks struggle to tolerate this stuff.

Dog bite feels a little better today, hopefully I'll get out of this one without some kind of infection. At least it looks cool. You can two deep incisor marks and then a row of bottom teeth underneath, making the shape of a smiley face.

So, the subject of this post. I've said it to friends already, hopefully it's not just whimsical talk. I'm qualified for the 2010 Boston marathon. If you qualify in a race towards the end of the calendar year, it's good for the next 2 years. So, my goal is to cash in my 2010 qualification. There, it's out. Hopefully, it's also going to be do-able, and not some impossible delusion. Ah, the balance between being a optimist and a realist. Working to break boundaries without wasting potential banging your head against boundaries that just can't be broken. How do you know? When do you adjust dreams that can't come true? Is it giving up? Or is it healthy perspective? My mother tells me that I wanted to be a scarecrow when I grew up. Well, that never happened, although I think it made my mother nervous enough to go out and buy me a play doctor's kit. I never became a doctor, though. Nor president. And how many kids say that they will be one or both of these things when they grow up, and then end up as recreation center managers (like me)? I love these:

http://www.despair.com/potential.html

Good stuff. Boston 2010, along with a trip on the space shuttle. We'll see which one happens first.

Survival of the fittest

You know the joke where there are 2 guys in the woods and they come across a ferocious bear, and all one has to do to survive the situation is outrun the other? Well, that's similar to what happens to the only walker in the social running group. Dog bite! Not just any dog. Nasty, mangy farm dog that's probably never been inside the house. There's one immune system breach that I'll have trouble explaining.

Progress, finally

Got some bloodwork back... CPK down to 550. Holy cow, did not expect that much of a drop, and Doc said that he was pleasantly suprised as well. I will cut the Prednisone from 80mgs/day to 60. Which is still a massive dose, but at least it's not 80. I was so excited that I didn't sleep. (that's a steroid joke...)

I have been reading about the term "athletic identity". I set up a friend's bike trainer in my house, and can spin a little as long as my posture and core can hold out in a road biking position (for now, about 25 minutes). I mentioned earlier this week that I walk-jogged. These activities, more than anything else that I've done so far, have helped me feel like myself and that I am re-engaging in a familiar world. I am trying to come up with a plausible research question to study this phenomenon in my dissertation. Another aspect of identity that I feel I have lost is that of a woman. I have been wearing t-shirts and sweatpants, have acne and a beard, have a misshapen body, and in general, feel invisible as a female. It's more than simply not feeling attractive to the opposite sex. I find myself wanting to wear impractical, ultra-feminine clothes. And have an immaculate pedicure all of the time. I feel androgynous and marginalized from any gender-related contexts. So, girling it up will probably be the next order of business, which will probably shock the hell out of some people.

What to say when someone is sick...

Do say:

• You're tough as nails.
• If anyone can beat this, it's you.
• One step (or mile, or inch: pick your distance) at a time.

Do NOT say:

• Everything happens for a reason.
• If I had only part of your normal strength, I'd be happy.
• At least you're walking.
• Everything is going to be fine.

Because you don't know if everything is going to be fine. What is "fine", anyway? Only I can define that, and it will be ever-changing for the rest of my life. As of today, "fine" means my old life back, exactly as it was. No one knows the extent to which this disease will rob me of that, not even the best doctors. But the probabilities and statistics are that it will rob me of at least a portion of my physical capability, independence, strength, identity, etc. I can't bear to hear someone who doesn't know the ins and outs of what I'm going through tell me that it's going to be "fine". I know that this is just an attempt at optimism and a way of telling me that I can beat it, but the phraseology could use some work. I'm glad I've gotten this enlightenment in choosing words of encouragement, perhaps it will make me a better friend. Hearing the right words at the right time really is a powerful and comforting thing, and being able to choose them well is a skill.

Can't help it

I am going to incriminate myself to my doctor and doting mother, but I can't help it. I walk-jogged yesterday. More walking than jogging, and the jog was a modified shuffle at best, but it was there. I have been reading articles about lost athletic identity after an injury/illness, and how people will continue to wear their gear, speak the lingo, and other tricks to retain continuity of their old athletic selves. Well, I have done those things as well, but this simple activity did more to make me feel like myself than any of that so far. What was it about pushing past the walk that felt like such a higher purpose? Athletic identity, what an interesting concept.

May 1, 2009

Waiting on results from my latest Dr. visit, which was 2 days ago. I feel like I have no basis for judgement regarding how I'm doing, no template for recovery, no statistics to measure up against. I came away from the appointment (as usual), with a cloudy perception of how things are going. My take was mixed... functionally, I seem to be doing as well or better than the Dr. could have hoped for. The actual disease, however, didn't seem to be moving out of my body as quickly as he would have liked. The part that scared me was that he mentioned that I am pushing the dosage limits on the drugs that we are using for now, and that treatment options are fairly limited. It is still early, and he advised me that I will have to be patient, but it is easy to let my mind run wild as I contemplate the idea of hitting a recovery plateau.
Functionally, I feel as though I am making progress, but at a snail's pace. I also feel that it's not exactly linear, either. I will have a good day, and then the next will feel worse. I will feel springy and functional in the morning, and then stiff and weak by evening. Progress is definitely not measureable from day-to-day. What I can do now though, includes:

• Lifting my arms over my head
• Changing into/out of most shirts (within reason, like cotton t-shirts)
• Walking a few miles at a time, including hills
• Lifting very light weights, strength exercises with the band
• Using cardio machines like the elliptical trainer and stairclimber at low resistance
• Showering unassisted, including washing my own feet

Exercise remains one of the things that I feel I can do best, and it feels wonderful to do it. I am very happy that exercise is recommended, and feel like it is something I can do to help myself. I am fortunate to work in a recreation center where I can utilize some excellent equipment, and feel like I am my own best physical therapist at this point. I am not driving yet, I still lack the strength to turn the steering wheel with authority at 40mph, and don't quite have the reaction time that I need in traffic or at higher speeds. I might be able to drive around town at off hours, but wouldn't touch rush hour or the interstate.

My eyes continue to bother me, there is alot of pressure in them and I get the sensation that they are bulging out of my head. Another recent discomfort that I suspect the Prednisone is responsible for is some increased joint pain, specifically in my knees. I hope this is the result of the steriods and not the disease. This is one of the symptoms that contributes to my perception of a backslide in my progress... a two-steps forward and one-step back kind of feeling.

We will see. The doc told me that he sees me as a motivated person who wants what they want and wants it yesterday. Whether that's accurate or not, part of the reason that I want to know how I'm doing and why I'm not doing better is that as previously mentioned, I have no guidance or blueprint regarding the normalcy of recovery. I would love to compare myself to norms, but there don't really seem to be any. Nothing like sailing without a compass to make you crazy. I've compared it before to running an super-long race with no concept of where you are on the course, no mile marks, aid stations, sense of direction or time, other runners to talk to, etc.

And still waiting on the latest bloodwork. More soon.

April 27, 2009

I have not posted here in a month or so, I've been updating friends & family more through email and Facebook, primarily. From time to time, I'll find myself googling other blogs about Polymyositis experiences just to grasp at any information that I can about others' experiences, so I want to make sure that I don't abandon this medium as well, in case anyone out there can gather any use from it.
Since I last posted, I had a rheumatologist appointment in which my CPK's were measured at 2,600. Considering that I started out at 10,000 in early February when I first walked into the office, this is progress. Unfortunately, however, not enough progress to taper any medications just yet. I am still taking 80mgs/day of Prednisone and 15mgs/week of Methotrexate. Fortunately, I do not feel that I am experiencing the degree of horrendousness that others have described with Prednisone. I am uncomfortable, for certain, but not miserable. I have trouble sleeping, feel pressure in my face and eyes, have sore joints, acne, and facial hair, but none of these things are absolutely miserable. So, either I'm a trooper, side effects are highly individualized, or the other shoe hasn't dropped yet and I'm just being naively optimistic. I'll have to let you know, especially once we start to taper. Speaking of tapering, my next rheumatologist appointment is in a few days. He almost let me talk him into it last visit, but the CPK's were still too high.
Ok, so to get off of the technical Dr/med/enzyme speak...
I am getting stronger every day, but this progress is not detectable on a daily basis. It is more noticable in the form of functionality. All of a sudden I will notice that a task became possible or slightly easier. For example, I touched my own feet for the first time last week, and a whole new world in which I could change my shoes, socks, and clip my toenails came back online. However, I have not had any other major breakthroughs since then, so I feel a little stalled out. Even though I'm sure that improvements have happened in the last week, if I can't utilize them in some way, I really can't detect them. Every day still carries discomfort, weakness, stiffness, and fatigue. I am encouraged when people tell me that I'm looking better and stronger all of the time. I believe them, and can detect this type of improvement since, say, February, when I was pretty down-and-out, but on a daily basis, I really don't feel it. Patience is a major virtue, here. I had written in one of my last email updates that this disease will be measured in months and years... which is the reality of chronic disease. For the first few months, I had treated it as an injury that had a more tangible recovery process. I still hope that I progress in this way, with a nice, linear, upward progression and an endpoint in sight that indicates "recovery". I try not to let the fears creep in that realistically, there is no way of knowing how recovery will progress, the extent that I will regain complete normalcy, and the way in which my life will be permanently altered. It is still early. Life is long, and I hope that in a year or who knows... that this time in my life will be a memory. I keep typing words like "polymyositis success stories" into google... it doesn't return much. I want this blog to become something that a similar search will hit. It has to be.

March 28, 2009

Today marks... well nothing, really. It's another Saturday, and things still remain fairly day-to-day as far as basic strength and functionality limitations. I am still waiting for this initial polymyositis onset to come under control. I am not working full-time yet, am not able to engage in normal social outings, and still can't perform much in the way of self-care. I feel stronger than I have, but have yet to feel any significant improvements. My leg muscles feel the most improvement so far, and I have been walking and using cardio machines like the recumbent bike and elliptical trainer at work. However, my trunk and arms remain fairly weak, and there is quite a bit of arthritis in my hands, wrists, and elbows that prevents some very basic dexterity. I still have trouble swallowing, and it affects my speech. So, the last few weeks have seen a little improvement, but this improvement is relative to the bottom of the barrel where things were pretty ugly.
Fortunately, optimism remains. I am aware of the side effects of large steriod doses, and I am attributing a general positive mood, energy, and mania to those, but can't help sometimes being glad that I have always been a generally upbeat person. I am trying not to feel sorry for myself, and negative moods generally result from the feeling that I am ineffective at work and steering a sinking ship with the projects that I am supposed to be managing. I know that it's probably worse in my own head, but I hate feeling like I am doing a poor job. I am not a good leader, manager, boss, mentor, etc. at the moment, and this impotence makes me feel like less of a person.
I have tried not to worry too much about the long-term ramifications about this disease on my lifestyle and hobbies yet. I am comfortable with the knowledge that this initial onset could take several months to recover from, and I try not to worry beyond this anticipated time period. I have friends who are cancer survivors, and I sometimes feel a twinge of guilt when I think that I'm not grateful to be alive. This disease never put my life in danger, it just presented some significant disabilities. I am not content to accept them yet and focus on the things that I can still enjoy in this life. I want to run again, and on my terms, including trails, ultras, and racing. I want my identity back the way it was, and so much of it involved physical strength. I'm not ready to let those things go. Not yet.

March 9, 2009

I am done with doctor visits for a few weeks. The initial diagnostic and treatment implementation phase of this seems to be underway. As of now, my CPK enzyme levels have dropped from 10,000 to 5,000. The normal level is 100. There is still alot of work to do on the inside of my body to stop the immune system attack and bring the inflammation under control. I continue to be on a high dose of Prednisone, and Methotrexate was added for immune system suppression. I will probably be on a combination of these drugs for the next few months or more as we try to get things under control. I can expect to remain without any noticeable physical improvements for another month or so. Part of the unfairness of autoimmune disease is that it is so unpredictable... there is no normal or expected outcome. There is no way of knowing when, how, or to what extent recovery will happen, both in the short and long-term.

I still feel lost in my own life. I have no control over my own body. I have no control at work. I have no control over small things that I drop onto the floor and must leave for gone until someone visits me and can pick them up. I have no control when my feet get cold and I want a pair of socks. I have no control when I get tangled up in the sheets in my bed and can't get out. I have no control when I want a drink with a screw-on lid and can't open it.

I am still fighting this disease in the short-term. I can deal with being down temporarily. Everybody gets injured or sick from time to time. I am ready for a physical fight to get the attack stopped and gain some basic strength and function back. I am prepared for this to take a few months, and I am up for the challenge. This is good optimism. The bad thoughts creep in when I worry about the long-term ramifications of this disease. I have googled too much for my own good, and have seen horror stories in blogs. Where are the people who beat it and are living their polymyositis-free lives? Where are the runners who made a comeback and have a newfound appreciation for their strength and ability?

March 4, 2009

Trying to put this fire out is proving harder than I thought. I have been on 80mg/day of Prednisone for 1 week, and 40mg/day for 2 weeks prior to this one. I am as weak as ever above the waist... I cannot raise my arms above shoulder level and cannot lift my neck off of the pillow. My hands are useless, I can perform basic push/pull functions of very little force, but with no dexterity. I can still sit/stand on my own, which remains the bastion of my independence and functionality.
I am perceiving feeling the start of some Prednisone side effects. My joints feel like those of a 100-year old woman. My hips and knees feel taxed while walking, the bones in my shoulderblades feel like they grind against everything they touch, like the mattress or backs of chairs. My eyes feel puffy and slightly blurry. I feel uncomfortable in my own skin, like a snake that needs to molt.
Every day that goes by is one more that I hadn't planned on feeling this way. Every morning begins with an internal curseword when I realize that it's still here. In general, I still maintain what I think is a decent level of optimism and foresight, but I also cycle through fear, disappointment, and just plain weariness on a regular basis. The physical weariness definitly takes its toll. I sometimes compare this to running a marathon with no sense of distance or time. Are we at mile 2 or 23? If I could know the distance and terrain ahead, I could plan my race, both physically and mentally. The weary part is putting one foot in front of the other with no idea where I'm going, how long it's going to take to get there, or even if there is a definitive finish at all.
Today is obviously a little bit of a downswing in mood. I'll bounce. Really.

Reflections 3/1/09

Work: I have been off of work for close to a month. I have not been off the whole time, rather, going in for a few hours every day to get some face time in my office and try to stay mentally sharp. I feel very ineffective, though. It takes me so long to get up and walk to another office or to the copier. I work in a recreation center, and part of what it means for me to do a good job is to be active throughout the facility. I have not walked through the facility in weeks... I stay in my office stuck in my desk chair. I will try to work on administrative tasks that can be done in this position, but when I find myself needing to pull something out of a file cabinet to complete a task, I have to stop everything because I can't open the file drawer. I have to ask co-workers to stop what they're doing, come into my office, and open the drawer for me. Very simple administrative tasks that I think I should be able to do at my computer have turned into lengthy, cumbersome ordeals that I can't complete by myself. It's very frustrating to feel so helpless. I feel like I create more difficulty by trying to continue to manage projects. I am not communicating effectively with my co-workers because I am simply not there enough, as I can only sit and stand upright for a few hours without my back and trunk muscles failing, creating the need for me to lie down and rest. I have hit this wall several times at work in the last few weeks... a sudden, overwhelming urge to lie down, because my body will not physically hold itself up anymore. I am fortunate to be able to take a large amount of paid leave, and my co-workers are supportive. However, this situation is not sustainable. I am going on like this day after day, hoping that I will be functional enough to contribute soon, but it is not happening yet. I feel like I am straining the resources of my co-workers by delegating all of my work, and deadlines can be postponed, but they will catch up soon. It is hard to operate without a plan, and part of my anxiety rests with not knowing when or how this will resolve.

Friends: Wow. If I am experiencing negative emotions and fears about not being able to do my job, I am experiencing warmth and gratefulness with the support and love shown by my friends. I have had such a tremendous outpouring of concern, and more offers for help than I have a need for. Friends have taken shifts in letting me stay at their houses or staying with me in mine, helping me take showers, loaning me clothes, cooking for me, and cleaning my house. They have arranged get-togethers and pot-lucks for me. They spend their nights and weekends with me, catch me up on gossip, and discuss future plans for when I recover. They listen to me talk about the minutiae of symptoms. They talk about how much butt we're going to kick when it's all over. Our lives are so full and free time is so precious... I know how much of a gesture of friendship it is to allocate time for this kind of care. I am truly touched.

February 2009

The diagnostic process began at the beginning of February. I made an appointment with my GP, who sent me straight to a rheumatologist. Luckily, a cancellation resulted in me being able to go in the very next day, as I had been warned that an appointment could take weeks to get. I saw a local rhrumatologist who asked me to describe my symptoms in detail, performed a physical exam, and then drew blood for some initial tests. The very next day, he called back to ask me if I had been involved in some sort of severe physical trauma in the last 48 hours, such as a car accident, a bad fall, or a heart attack. He said that 2 enzymes that are indicative of muscle damage were very high, so much that they needed to draw blood again and rule out measurement error. He also advised me to drink alot of fluids to keep my kidneys flushed, as this level of enzyme could damage them. I re-submitted blood, and the enzyme levels were still extremely elevated. At this point, he seemed to assume an elevated level of alert with my case. He ordered a muscle biopsy immediately, which I had on February 12. Immediately after the biopsy, I was put on a 40mg/day dose of Prednisone. I continued to weaken, at this point extremely disabled. The strongest muscle group in my body seemed to be my legs. Although they too were weak, I could still rise and lower myself from sitting/standing positions, although with much difficulty. The ability to get onto my own feet and shuffle around was critical to my independence. As long as I could still get up, I could take myself to the bathroom, get to the kitchen, and other very basic functions. My upper body had become virtually useless. I had no arm strength, and my hands were very weak. They just hung off of my body like sticks. I did not have the dexterity or strength to unscrew the lid on my contacts, open a tube of chapstick, or floss my teeth. I could not rise from a lying position without assistance, my neck would not lift off of the pillow, my abs would not pull my body up, nor could I use my arms to push myself up.

I was on 40mg/day of Prednisone for about 2 weeks when the rheumatologist seemed suprised and concerned that I was not regaining any strength or functionality. At that point, he doubled the dose. Within a few days, I began to feel like I had just a little more strength come back to my legs. I had reached the bottom a few days earlier when I began to feel like my legs, which had been the last holdout of strength that I had, seemed to be getting weaker, to the point that I feared that I could no longer get up or down from a sitting position by myself anymore. The improvement in leg strength after a few days of the increased dosage was very hopeful, small though it was. I didn't notice improvements anywhere else, though. All muscles above the waist seemed as weak as ever, and I had noticed that my posture was feeling very compromised as well. When standing, I noticed that it seemed hard to draw in a good deep breath, as if my diaphragm couldn't properly inflate. I had also noticed that I was getting constipated, as if gravity couldn't work in its usual direction or the muscles couldn't push things through my system as effectively. My hands were very stiff and weak, and I performed manual tasks by simply pushing my hands around rather than trying to grip and grasp things.

January 2009

I had planned on running the Athens-Big Fork trail marathon on January 3, 2009. It is a fairly difficult, very hilly marathon-distance trail run. I was still feeling physically down, and was debating doing the race. It was at this time that I first remember thinking that this might be some kind of autoimmune-related issue. In fall 2005 I had experienced a sore, weak, and arthritic feeling in one of my arms, extending from my shoulder all the way down through my hand. I had limited use of the arm, and poor dexterity. I worried at that time about an autoimmune flare-up in the form of lupus or something related, but it passed after a few months. Before Athens-Big Fork, this episode crossed my mind and I wondered if I was experiencing something similar. I decided to go through with the race, primarily because the terrain is so severe that there is often more walking involved than running, and that if I felt sluggish, I could always slow down and hike. I did feel sluggish during the race, took it easy, and finished in a much slower time than I had in the previous year. Although my kneecap injury was not debilitating or acute, it was still not healing. There was a constant level of low-grade swelling and soreness that never seemed to change. After the race, I had a running friend who is also an orthopedist comment to me that he had never seen a bruised kneecap not heal after 2 months, and that it was highly unusual that I was still experiencing symptoms.

I continued to feel more sore and weak in my muscles through the rest of January. I noticed that I was lifting less weight in the fitness center. The fitness center helped me to see empirical weakness through comparison with weight amounts that I usually lift. It became obvious that I had a health issue emerging during this time. I was especially losing arm and upper body strength. It became hard to lift my arms over my head, and I began having trouble changing my shirt when I could not get my arms through the sleeves. I was starting to alter my daily activities and barely able to hold myself together at work. I began wearing the same clothes for a few days in a row, and sleeping in the same outfits in which I went to work because I simply couldn't change them. I was starting to walk with a labored gait. It would require all of my strength to simply get myself to work, and once I would get there I would cry with panic and fear when I would try to do normal tasks and simply physically fail. I alerted my boss that I was feeling like I had a health issue developing, and decided that it was time to start the process of doctor visits.

During the last week of January, we experienced an ice storm that was fairly debilitating for Fayetteville. We had no power for a full week, and the entire city was effectively shut down during this time. My plans to get to the doctor were postponed, and when I talked to my parents on the Sunday when things finally seemed to be back to normal, I was in tears. I knew that I had a serious problem, and it was time to address it. I could no longer dress myself, take a shower, or perform basic functions that required pushing, pulling, or lifting of more than a few pounds. The next day I made an appointment with my GP.

December 2008

December 2008 is when I began feeling some definite weakening. As previously mentioned, I had planned to run the Memphis marathon on December 6, but had cut my training short to let a bruised kneecap heal. Since I was out of my regular training routine, I had no idea how the race would go. I was worried that my knee would become too irritated to finish, and a secondary concern was that I might create another injury by having a compromised gait. Suprisingly, however, the race felt great. I felt strong and fast, and my knee and legs didn't bother me at all. I finished in 3:37, which qualified me for the Boston marathon with 3 minutes to spare. It was one of the most fun race days in recent memory.

After the marathon, I went into recovery mode. I took it easy, rested, and did light bouts of exercise. The weekend before Christmas, some friends and I went to the Buffalo River to do some trail running. It would be the most I'd run since the marathon. My friends left me in the dust that day... I kept pace for the first several miles, but found myself lagging behind during the second half of the outing. I felt that my body just didn't want to go, like I was trying my hardest but barely moving. I reasoned that at that time, my body was still recovering from the marathon, and that I was just having an off day. I was just feeling a little physically down.

I continued to do more light running here and there through the Christmas break. I didn't do anything that resembled a hard workout that would have helped me to gauge my level of physical fitness, I just wanted to enjoy the recovery and stay active on my feet. However, towards the end of the month, while I was at my parents' house for the holidays, I began to notice that I felt muscle soreness. The level of soreness was not abnormal, it felt like I had done an excessively hard workout or run a long race. What was abnormal, however, is that I hadn't extended myself physically at all. I was resting and recovering, but I felt like I had just run a 50K. I had been doing some basic exercises at home such as crunches and pushups as a light strength workout, and I noticed that those exercises were more difficult than normal. I also noticed that my jaw hurt, and I wondered if I had a cavity or some dental issue. But there was no pattern with the jaw pain... sometimes it would be on one side, sometimes on the other, sometimes gone completely. Another oddity that I noticed during this time was a severe sense of cold in my hands. I had been out running multiple times where I lost all feeling in my fingers, to the point of extreme discomfort. It's certainly not uncommon to have temporarily cold fingers on a run, but these instances were abnormal by a long shot.

By the time I left my parents' house to come back to Fayetteville for New Year's, I was feeling like something might be a little bit off in my body. I hadn't put any further thought towards it, though, still assuming that my body was a little bit down and still recovering.

November 2008

November 2008 is as far back as I believe events of possible significance may have occurred. The day after a trail race near Hot Springs, I decided to go out for a low-key recovery run on trails near my house. Not long after I got onto the trail, I tripped and fell forward, smashing my kneecap squarely on a rock. It hurt acutely and swelled, and I immediately limped home to ice and self-medicate with ibuprofin. I knew that I had bruised it badly, and treated it gingerly for the next few weeks. While the swelling went down to a small degree, it didn't seem to be healing. I had been training to run the Memphis marathon on December 6, so after a few weeks of not healing, I began to re-think my plans for the race. I decided to go to an orthopedic to get my knee checked out in case there was a fracture or something on the kneecap that I would make worse by following through on my marathon plans. I had x-rays, and they didn't show any problems. The diagnosis was a bruised kneecap, which i was told could take several weeks to heal. I was advised to alternate heat and cold to help speed up the healing process. With a clean x-ray, I decided to go ahead with my marathon plans. I simply had some healing to do, so I didn't do much running for the remainder of the month. I mention this injury because it could have been (?) one of the triggers of the onset. From what I know about autoimmune diseases, they can lie dormant in your body, and something like an injury or stress can push it over the edge and cause it to activate. I remember everything feeling good and right until this point. I never really recovered from this injury, and I wonder if this was around the time that the disease started creeping in.

Myositis Diary

I have recently contracted an inflammatory myositis. I don't know what lies ahead of this disease, but I want to begin chronicling the events surrounding the onset of this disease so that I can have an accurate recollection of its progress, treatments, and effects.

I will start with some basic background about myself. I am a 31-year-old female living in Fayetteville, AR. I am a campus recreation program administrator at the University of Arkansas. I have always been very healthy and active. I enjoy long distance running and have competed in marathons and ultra-trail races.

The only scar on my medical history is a child-onset case of alopecia. Alopecia is an autoimmune disease in which the body's immune system attacks its own hair follicles, resulting in baldness. I experienced small, recurring bald patches on my scalp for several years beginning around the age of 8. Hair has re-grown and fallen out in cycles, but the general progression has been toward total baldness with no re-growth as I have gotten older. For the last several years, I have been completely bald, including eyebrows and eyelashes, as well as body hair. As with most autoimmune diseases, there is no cure, only cycles of remission and flare.

Autoimmune diseases are nebulous and erratic. Symptoms of various autoimmune diseases can overlap each other, and having one autoimmune disease can predispose someone to developing another. This fear has crossed my mind occasionally, but has never been realized until this point. As previously mentioned, I have been blessed with good health, strength, and fitness thus far in my life. I hope to regain it all once this new disease has been addressed. Until then, however, I am finding myself in uncharted territory as I progress through unknown treatments and prognoses. I do not know what tomorrow will bring, nor how I will feel in one month, 6 months, or a year. This journal serves to chronicle this journey. Please feel free to email me at heckums@gmail.com if I can help anybody by discussing this disease. I know that sometimes it helps just to ask someone else who knows where you're coming from...