So. Monday. I had a pulmonary function test. And a neurology appointment with the new doctor.
Had trouble sleeping Sunday night and couldn't manage to sleep in Monday morning so I felt like crap. Then my stomach decided to get in on the act and I spent most of the morning running back and forth to the bathroom and trying every method I know to get my stomach to quit being queasy. Seriously. Sipped water. Took some Pepto. Ate a ginger chew. Ate something else, just in case it was because I was really hungry but didn't realize it. Took more Pepto. More water. Finally gave in and went for the big gun - a single diphenhydramine (Benadryl) since it works as an anti-emetic in addition to its various other properties and is closely related to the active ingredient in a lot of motion-sickness meds.
Perhaps not surprisingly, mid-way through the pulmonary testing I barfed. It was awesome. Courtesy of the PeptoBismal tablets I'd taken and the anti-nausea liquid (essentially a syrup) I had also taken it was bright freakin' pink. I made it to the trashcan in the room, thank goodness. I still shudder to think how awful it would have been if I'd ralphed all over the mouthpiece. I also managed to nail the edges of my pants, my shoes and my hair.
Anyway, I had, up to the point I projectile vomited Barbie's Malibu Dream Corvette paint, felt increasingly like I was having a panic attack. Shaky, broke out in a sweat, got really dizzy, thought I might pass out, etc. I'm guessing a combination of fatigue, existing stomach ick, anxiety about the upcoming neurology appointment (gee, why on earth would I be anxious about neurologists?) and hyperventilating on command is what did it. Fortunately Tom was there to help clean me up and make me feel better and not make too much fun of me for barfing on my shoes.
I get to finish it next week (the pulmonary test, hopefully not the barfing). Yay.
So. On to the new neurologist. She's awesome. She talked to us. Like we were human and have mostly functional brains. She believed me when I told her about my symptoms. There was no uncomfortable cross-examination. There was no "well, but you're not doing that now" as though that somehow means that I never do that. She paid attention when we talked. She asked sensible questions and explained what she was doing. She noted that I've had to quit school and can't work or drive. She immediately went and got a colleague to consult with regarding my symptoms and to have a look at me. I didn't have to prompt her. It was amazing. So much of the stress of being sick has been caught up in that my previous neurologists (aka the Douchetastic Duo) behaved as though they either thought I was lying or that what I was saying just didn't matter.
I don't know if people realize how insidiously devastating it can be to have the people who are supposed to be helping you seem (and I say seem because, to be as fair as possible, I don't know for certain that the Douchetastic Duo didn't believe me, though that certainly seemed to be the case early on and I think it colored every later appointment) to doubt you, especially if you already have an unfortunate past history of being treated as though you were "malingering" or simply weak. You start to doubt everything. You doubt if your symptoms are really real, if you are as sick as you think you are. You wonder if you're just lazy or cowardly. You wonder if it's all in your head. You treat every appointment as a battle to be geared up for. You look at your symptoms and try to track them and document them as best as possible, to martial evidence, to anticipate questions and doubts so that you can answer them and then second guess yourself and worry that if you seem too prepared, too knowledgeable then that will itself give them more evidence that you're simply a "hypochondriac" or "a hysterical woman" or simply"crazy." And after you repeat to yourself over and over that this is real, this is how things are, then you have to deal with the doubt and the fear that the doctors you are supposed to trust, the people who are supposed to be taking care of you aren't to be trusted. Aren't really looking for answers. Don't really care. And then you have to worry that eventually everyone around you will decide "oh, the experts didn't find anything. You can't really be sick, then. Suck it up and get on with life." It's awful. It's one of the most horrible things in the world.
But, things are looking up, I think. I have a lot of hope invested in this new doctor, that she will be someone we can work with, who will be of help and some comfort. Things are still unclear and frightening and uncertain. But I think that at least more of that insidious doubt will leave me and make it easier to cope with daily life.
We are running some more tests and we will see her again next month.
In the meantime, I seem to be in another cycle of intestinal distress along with a return of genuine insomnia as opposed to simple (hah!) delayed sleep phase disorder. Joy. This may mean some upcoming appointments get rescheduled because, strangely, I'm not at my best when I've only had a few hours of sleep and constantly feel as though one or both ends is going to explode.
Despite all of that, though, I remain immensely grateful to have Tom with me to help bear all this nonsense. And our friends to help us. And Oreo to be, well, Oreo.