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.