A very lucky spoonie

That it is, that it is. But on the same token...

I haven't been around these parts much because, frankly, I just haven't had the energy to write much. This used to be a favored haven of mine, and now it's kind of a last resort, a place to turn to when I have excess steam to blow off and nothing more.

I'm sincerely hoping that this medicine my pan doc has me on will prove its mettle and do as she says it will, taking away some of my full body pain. It's a regimen that she says has helped many patients before, so… On the one hand, I'm really disappointed that it isn't working yet and I'm incredibly frustrated that I'm sicker than ever and in more pain more consistently than I've ever been in before, but on the other hand I have a perverse satisfaction that says, "Ha ha! I told you so! I told you I was sick and that I was super dubious about this treatment plan! Who's the man? I'm the man!" Definitely conflicting feelings there. And while every day brings its own special brand of misery (for instance, it is  very, very painful to breathe right now, both inhaling and exhaling, and my shoulders are on the upswing of a viciously aching bell curve), if I don't feel the absolute worst that I've ever felt I find it difficult to admit that I really do feel all that sick. I mean, I do feel poorly, yes, but I'm really not that sick, right? Because I'm not in so much pain that I'm vomiting. Or because I can still walk. Or because I can lift my arms above my head. Etc., etc. I'm telling you, being chronically ill and in pain brings some weird twists of thought and feeling to you after a while.

Other than just trying to hang on and make it through the days, it's just been… pretty pleasant, actually. I've been maintaining the cleanliness of the house pretty well. I'm proud of myself. I've learned that doing a dish right when I'm done with it takes far less energy than leaving it for later when I might feel better (because let's face it, I'm not going to feel better later), and it looks a lot better, too. I'm eating better too, I think. I still have zero energy or stamina for cooking, and not much appetite (I'm nauseous a fair amount of the time), but I've learned that sandwiches are a good way for me to get some veggies and protein into my diet, which I was severely lacking before. Also, I tend to have some sort of fresh fruit on the side with my sandwich, and that helps with variety of diet as well. I feel like I'm doing better with my diet this past week, even if I am sicker than I've been. It really helps that some friends have given me fresh kale, spinach, and swiss chard from their gardens and that's what I've been using in my sandwiches and stuff. I'm like, "I gotta use it before it goes bad!" Hah. Oh, and I finally cracked open an avocado for the first time in forever since David died, and I only cried a little.

I've realized there's some very good things in my life that help to balance out the bad things that are so easy to focus on. For one, there's my friends that have been showering me with random acts of kindness. The Artist took me out to tea the other day (well, it turned into lunch at Olive Garden actually, because the tea place was closed, but whatevs) and when she came to pick me up she brought me the sweetest little miniature white orchid plant. It's absolutely gorgeous! Funny thing, too, is that ever since I lived with this elderly couple in Visalia that had orchids all through their house I've wanted orchids of my own. It's been years and I've never been settled in one place long enough to realize that dream until now. Yay! A long distance friend of mine from SOULS that I call Pookie sent me a mug in the mail that reads, "The past, the present, and the future walked into a bar. It was tense." Hah! I got that today, and I already inaugurated it with a cup of silver needle white tea which was super delicious.

Another thing I realized the other day while talking to Rose was that, if I hadn't married Drogo… I don't know what kind of position I'd find myself in now. How would I support myself? Where would I live? How would I pay for my special food and for my medicines and my doctor's appointments? How would I take care of myself on a day to day basis? The timing of our marriage and my subsequent plunge into disability was fortuitous, as far as these things go. I'm a very lucky spoonie. In a similar vein, we are in a pretty good position to be handling this very challenging situation. We own our own home (and before 30 at that!), we have minimal debt, we are able to live off of one income comfortably even with the crazy doctor's bills (well… okay, we manage), we have good health insurance, and we don't have any dependents. Again, I'm a very lucky spoonie.

So while it could be better (healthy bodies, anyone?), it could also definitely be worse. Drogo and I don't have to choose between medicine and rent. I'm able to get the health care I need in the big city even though it's a stretch financially. Most importantly of all, I have a significant other who cares, who does his best to understand and support me, and a far-flung network of friends and family who do the same. I'm a very lucky spoonie.

Note: If you need a quick refresher on who's who, check out the post Appellations for the list of names and nicknames I've assigned everyone.