Saturday, March 28, 2009

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.

Monday, March 9, 2009

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?

Wednesday, March 4, 2009

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.

Sunday, March 1, 2009

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 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...