some heavy stuff

So, I want to go to sleep here so I won't write much... but... as we run the gauntlet of doctor's visits, tests, treatments, and multiple trips to the pharmacy for all manner of pills and potions, it starts to seem to the doctors that Loopy's main problem is not her back.

The numbness in her feet has spread up her legs to her hips, and now her legs feel weak and shaky a lot of the time, and she has trouble picking up her feet all the way when walking. I've been walking alongside her mostly and catching her when she trips, but tonight she tried to navigate the gym on her own and fell full length on the concrete by the pool. We joke about it ("that mean bad concrete came up and whapped me in the face!") but it sucks.

So the spine specialist seems to be giving up and sending her back to the primary doctor to look for another source of the problem. The primary doctor says she's starting to suspect it could be MS. This was kind of a shock for me but Loopy said she's been suspecting it for a while.

I didn't post on here after first hearing that (which was, uh, Monday), because I thought she was going to have a test on Wednesday that would clarify the situation, but it turned out that that wasn't that test. So we're still in limbo and it starts to seem like we'll be here for a while. So we're sort of settling in to manage the symptoms and navigate the system.

In case it's not obvious, don't mention this to anyone in her department (aside from the friends who read this blog). If she does get the MS diagnosis (or some other diagnosis) she will then be able to figure out how to deal with it in career terms.

I have to say that as diagnoses go, while MS would suck, a lot, it's not as scary as some other possibilities. Worst case scenario would be a brain tumor, but as the doctor says, let's not go there yet—that's several steps down the line. Diabetes and leukemia have already been ruled out and I'm happy about that. The really nasty auto-immune disorders like lupus and ALS have not been totally ruled out, but according to the doctor, a particular blood test result makes them somewhat unlikely.

One thing that would be worse than MS (in my perhaps ill-informed opinion) would be one of those awful debilitating syndromes that half the doctors don't believe exists—like fibromyalgia, Epstein-Barr, chronic fatigue, etc. At least MS is visible on an MRI and therefore "respectable." (Here I am blowing a big kiss to our friend J who soldiers on with fibromyalgia despite the attitude of some in the medical profession, and is even now cutting her second album!)

As this little discourse makes clear we are adjusting to this new space, of tests and diagnoses, and not knowing, and waiting to see what happens next. We cherish each other and are so grateful that OLIF helped us get our marriage into such a good place before this happened.

In this context I thought a lot about cancelling my trip to Iran and basically I really wanted to, still want to, a little—it kills me to think she'll be carrying on with this process, the doctors and tests and so on, while I'm half a world away—that I won't be here for her and with her at such a crucial time.

But, OLIF, Loopy, and Loopy's doctor all urge me to go, as I will no doubt enjoy it and find it restorative and wonderful, and may not have another opportunity, who knows. Our wonderful, wonderful friend Miri has agreed to stay here and chauffeur Loopy around in exchange for the use of the car to go see Miri's new not-yet-a-boyfriend (keep us posted!) in Milwaukee on weekends. So Loopy will be safe and cared for. Just not by me.

"I feel like I'm abandoning you and letting you down," I say.

"Those are just your feelings. I don't feel that way at all," she says.

So I feel a bit as though the trip is sort of a river that's sweeping me along willy-nilly.... I rededicate myself to learning Farsi and seriously commit to getting the house etc in order for my absence.

*sigh*