Sunfish Posted October 27, 2005 Report Share Posted October 27, 2005 (edited) okay folks, i'm going to try to stay positive here.it's a struggle at the moment.just thought i'd check in re: where i'm at. if anyone else knows, i'd be happy to hear on a good note, i rec'd a call yesterday morning to see if i could make an afternoon appt with dr. shields (neuro who specializes in autonomic neuropathy) at cleveland clinic. i'd had an appt in january but they had a cancellation. so i got myself there yesterday and i was pretty pleased with the appt. it was particularly good timing b/c of my mestinon issues last week. he affirmed that it definitely sounded like that's what had happened - my GI tract not properly handling the Mestinon XR & thus in effect having an under, then overdose. he says he's seen it before, that the XR pills can be inconsistent in folks without GI issues, & even more problematic in those with motility issues. so....i at least like having some sort of explanation...and i'm going to work up to the higher dose again but with the regular pills. and he's totally cool with working with dr. grubb (and has other shared patients). he also wants me to do a sleep study & have the QSART testing done, as well as a few other things...one of which i'll post separately as i found it super interesting & it has an article to go with it.he's also going to try to help me get set up with access to outpatient IVs through the neuro/headache center as they have an infusion team for those who need IV migraine meds. this would be great since there are no close urgent care places & i won't voluntarily go to ERs for fluids...not a good use of anyone's resources in my book. hopefully this plan will work. that's the good/encouraging stuff.on the other side of things, i'm struggling big time. my ear started hurting monday so i called & got myself to the campus health center only to find the elevator broken. i had to scoot up the steps with help...it was SO embarrassing & frustrating, not to mention exhausting. the infection was only external (i.e. ear canal) & while my drums appeared fluid-filled, the doc didn't want to put me on antibiotics if not needed as i've been on them 4times since august between UTIs & ears. so we started with just drops but with no improvement (& worsening of pain) i was supposed to go back today. so the elevator should be fixed, right? especially since it broke friday. this is the campus health center....sort of something that should be accessible, no? not at all. i did call first & was pretty clear about my frustration & the fact i really didn't care to deal with the having to be helped up the back steps again. and it got me thinking about the other messes on campus. like the fact that i can't park anywhere but one location & yet the "assistive transporation" to get elsewhere is slow & more importantly unsafe. and likely illegal. (when in a wheelchair they wheel you up a ramp into the back of a mini-van with NOTHING to secure you & say hold on.) it's ridiculous. i ended up speaking with someone from the provost's office about the elevator situation and whatnot but i still had to go & sit in the hallway with the snack machines to get my ears looked at. and the doc was like "wow. i'm really surprised things could get that much worse in two days." both ears are now a mess inside & out. so now i'm on antibiotics - again - and still need to get my midterm paper finished that was due last week. ggggggrrrrrrrrrr.oh...and as a bonus....when i was picking up my eardrops from the drive-through pharmacy monday i got reprimanded for "loitering" b/c of waiting in my car in the spot the person at the drive-through told me to wait for around 5 minutes. i was laying in my car & was startled by a cop knocking on my window, who then proceeded to run a check on my ID. i look like a criminal, ya know. one who's trying to score some ear drops ah yes....and then, b/c i'm really struggling with all this crud i tried to make an appt at the counseling center at school...largely to vent about the issues on campus....and surprise, surprise....i can't park anywhere near the center so it's essentially useless to me. nice, eh? and i honestly don't feel safe using the transporation when i'm in my chair, which i have to be using right now if i intend to avoid hitting the pavement b/c there's still long distances within the buildings.fighting all these messes takes all the energy i have, which i need to be putting toward taking care of my health & my schoolwork...enough of a struggle at the moment. hard to do though when getting to the health center is such a mess. and as the weather gets worse i'll be able to access even fewer places campus wise.ok....par for the course...i've rambled quite a bit. i obviously never took a course in conciseness. thanks for bearing with me. tomorrow i'm off to CC again for urology fun. i know you're all jealous! melissa Edited October 29, 2005 by Sunfish Quote Link to comment Share on other sites More sharing options...
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