Working on My Fitness

For the first time in a long time, like really really long time, I'm actually able to engage in physical activity without extreme pain and/or feeling like death warmed over afterward. This is a huge development. I think there are a combination of factors playing into this. All good things, but all things that have taken a long time to come to fruition.

First, the plaquenil. Where would I be without it? My fingers are less swollen, to the point I may have to get my college ring re-sized. That's how long my fingers have been sausage-y. They almost look elegant. They're still short, but they aren't so stumpy. My joints hurt less, meaning pain doesn't keep me from trying to work out again tomorrow, or leave me feeling like I may have done permanent damage to myself. I feel actually good and limber after working out, instead of stiff, pained, and unable to move.

Second, I really think the airway clearance is making a huge difference for me. When I started this, I thought it was a little silly, to be honest. Why would I need to do this crap forever? Couldn't I just do it when I am not feeling well? No. The answer now is clearly no. I need to do it. I haven't been able to run without feeling like my lungs were burning since... I really don't remember. We thought it was asthma, which I guess it still could have been, but now I do not even need an inhaler when working out. My bronchioles don't burn. I used to get the feeling I'd run a very long distance after ver short ones. Now, I can go and go and push myself. That is amazing.

What do I mean by go and go? Last night, I ran 4 miles on the elliptical, if you can call that running. My average speed was between 7 and 8 miles an hour. Seriously! I can hardly believe it myself. Granted, it was on the flat setting on the elliptical, but I still think that's something to be proud of, especially since I've only been working out for the past week. I only just got the guts to do it. It makes me want to cry a little because I've been at points when walking a half mile was difficult, even in ideal weather. I've been at points when I dreaded coming to work because of walking from the metro to my office.

This is freedom to me. I can do things I want to do. I can get in better shape. I can be fit. It wasn't long ago when I didn't think that was an option for me in my life, other than trying to do some walking and not lose the function I have. Amazing.

To Concierge or not to Concierge

I have been thinking for a little bit now about getting a new primary care physician. I LOVE my current PCP, but her office isn't terribly convenient to my work and it can be very difficult to get the appointment time I need. She's completely focused on me when I'm there, though, and she knows me and deals with things... but I sometimes feel something lacking. I really enjoy talking with her, but she's not necessarily proactive in helping me with things and I am not entirely sure she's still a good fit for me.

In comes an offer for an affordable concierge physician service. They have a snappy website. They offer online scheduling for same-day appointments. They have specialists in women's health and complex conditions... and an office that is a 5 minute walk from work. It seems like a good idea, but what if they aren't as good as the current PCP? What if I want to go back? Will she feel betrayed?

I understand this is certainly a first world problem that I am fortunate to have.... and that many people even in the US don't get this kind of choice. But with choice is coming confusion.... What to do?

Excuses

It is unusual for me to not volunteer to take care of things. As many things as I can for as many people. Lately, though, I've not been able to do as much due to the aforementioned series of sinus infections (my sinuses still ain't right, but that's another post for another time). I am finding that this results in dirty looks from people, as though I'm not doing enough, or pushy emails about why I've not completed things more quickly. I am but one person. I can only manage so much.

This brings me to an issue a friend pointed out on facebook. Why is it that parents get so much leeway for leaving early, not showing up, being generally unreliable, when folks like me, who try their best but have a disease that gets in the way, often wind up holding the bag? I understand that parenting is difficult, but so is living with a chronic illness. I do not whine about it. In fact, if you know about how I'm feeling in a given day, feel lucky because I do not share that information freely (except here, but... not everyone reads this, so I digress) for fear that people will not see me as normal.

I never use PIDD as an excuse to get out of something. If I say I can't, it isn't because I just don't want to, although I guess feeling so crappy you don't want to do something could qualify in that case, but I won't count it. Other people are able to make me feel SO GUILTY when I'm taking their time away from their precious babies (they grow up so fast, you know?) because I can't manage to add some additional task to my plate. It isn't fair to me. If your kids are going to be your primary priority, say so from the outset and don't volunteer to help just to be on the list. Don't push your work on me because you can't actually do what you've said because, odds are, I am working hard to meet my own commitments.