Got a slew of appointments over with this past week. While I hate having them all piled up, it’s nice to know that I get a bit more of a break. I had ophthalmology two weeks ago, and things are still the same–with ophthalmology, that is really all you want to hear.
Tuesday was asthma clinic. My current respirologist is awesome. I originally got into her to try to get into a research study, but the specific program folded (or so it seems), so she has just morphed into my asthma doctor. Did the PFTs, gave my list to the clinic nurse, and got herded into another room so the doctor could stick things in my nose (I’m on intranasal steroids, but they have been a bit less than perfect lately). Apparently there were issues in there, so I have to go to the Ear, Nose and Throat doctor–boo. I’m also supposed to start doing saline rinses before snorting the steroids [hah. Badassmatic at its finest]. I tried my first sinus rinse today and aside from spraying saline all over the bathroom, I couldn’t do it right and I hated it and it felt icky.
Nobody seemed to care too much about my exercise tolerance being kind of sucky, so I suppose I am working on that myself. Which kind of means I need to exercise. We swapped my Symbicort over for a newer combination inhaler, Zenhale. It has a stupid name, but I hate the delivery device of Symbicort, so I am back in happy MDI+spacer land. The hope is that after a few more days on Zenhale I can start trying to [successfully] lower my Qvar, which has been my magic medicine. Fingers crossed! My PFTs were good, but medicated I think they were my lowest to date. The numbers are still nothing to complain about! My best PFTs ever, my FEV1 was 111%ish (how much air is forced out of your lungs on the first second of expiration), and my FEF 25-75% was 90% [this number is how well the small airways are working]. Tuesday’s PFTs, FEV1 – 95%, FVC (forced vital capacity) was 90%, and FEF 25-75% was 74%. Still excellent, still (aside from some indicated obstruction in the small airways) normal. But, especially that 74%, reminding me that things are not perfect. But . . . they are good! (FEF 25-75% becomes abnormal under 65% according to Googleyness). I am doing really well on the Zenhale so far . . . so fingers crossed it stays this way!
Wednesday I was back getting tests of my head done–some Individual Achievement Test thing. I was outsted for not knowing my multiplication tables, and then I redeemed myself because I can spell well. This test will take about a month to score. And I still don’t know why they were doing that one. The ADHD assessment part is complete, so this test was something totally different [for what I have no idea], but with that the results are not pointing them either to a definite yes or a definite no. Thus, my mom is going in to answer questions or something soon to see if she can give them any information that I couldn’t. Tuesday’s tests were also accompanied by some random school-related questions that I was not expecting (What’s your GPA? How many credit hours have you completed so far? Do you have any accommodations for tests? Are you distracted during tests? Do you have enough time? So, other than getting the big picture, I am not sure what that was about…). It is a very long process, but, I think it will, in the end, be worth it and I am happy that it clearly appears that they are doing the most thorough job possible. It will probably be another month before I know anything more (I was hoping to know much sooner than that what the results of the assessment were). To everybody who has sent me some encouraging words about this process, thank you so much. I cannot tell you how much it means to me to have your words in the comment form, in tweets and Facebook messages and e-mails.
Thursday I saw my primary care doctor. Nothing new, especially since I just had asthma clinic. Re-running the blood work we were supposed to repeat months ago, told her my iron will be no better since I quit taking the pills when I went on prednisone in the Fall so as to not screw me up and also I lost the pills, and she just laughed. I guess if I am not 100% compliant, I am honest, right (She also thought it was funny that when she came in I was like “Sorry, need to put all my electronics away. If I turned my phone off every time I was supposed to in a waiting room, I would never accomplish anything.” She just laughed and was like “That’s fine!”). Anyways, once again, uneventful appointment. Except, I essentially got in shit because both my primary care doctor AND my resp doctor were like “Okay, you need to be back onto two puffs of Zenhale,” (slash Symbicort). I am not a fan of this business, to be completely honest. I was doing really well on one puff twice a day, or so I thought, I don’t know what led them to this decision but they seem to, possibly without even talking to one another, be in cahoots about it (because it seemed that the primary care doctor had not yet heard about how asthma clinic went).
So, just have to go get the vampires to take my blood on Monday, deal with the ENT whenever that happens, and . . . then all of the waiting continues.
mapped out my mind / trying to find / a place that don’t exist […]
things change / and they’re not the way you thought they would be.
things change, addison road