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.