tonight you have caught me in a "moment." i do try to be positive- okay, i admit, at least positive in a cynical way. (i have a feeling that might be a paradox?) but i'm so freakin' frustrated i don't know if i'm going to burst into tears or do something totally violent like rip apart sheets of recycled paper (obviously, i don't get very violent.) however, this is at least a little progress, as a few months ago i would have been sobbing for hours by this point.
i have felt in a physical downturn for the past 10 months, and if you read through my medical records, it will state that in lengthy dr.~ish terms. but for the past month, i am not sure if i'm continuing that trend? or if i have plateaued? and if i am continuing the downward trend, am i have an MS attack? am i have a flare of the supposed fibromyalgia? and if i'm continuing on the plateau, does that mean the MS attacks caused symptoms that have turned into permanent side effects? or has my body just "accepted" the pain, the fatigue, the jerking, the slow and stiff movements? have my eyes done the same? they continue to read despite the black spots and side by side double vision that comes and goes.
sometimes i feel like i am doing more work than the doctors are- i'm way more on top of my medications (37+pills a day), and am usually the one suggesting treatment plans. on days like today, i would swear that the medical profession purposely doesn't answer questions directly so that he/she doesn't have to be solely responsible. but the bottom line is- I AM NOT A DOCTOR. i cannot make these kinds of decisions alone- i need and want their expertise. when i was in va, i felt that i had finally gotten into a good working relationship with the doctors at Georgetown. (quite frankly, i can't imagine why they wanted to keep me as a patient, i was horrible to deal with at first exams- shooting questions, answering with snappy retorts.) but luckily for them, they did anyway :) i had an internist acted as a quarterback- spoke with my other doctors, always available via email and phone, on top of my progress and any declines. he would monitor my pain medications, and refer me to a specialist at any moment he felt things were beyond his jurisdiction. my neurologist had determined most of my problems with MS related, not helped by being tossed around between specialty dr.s for much of '06. he felt an aggressive approach was necessary, which i embraced whole-heartedly.
but now i'm in a new state. i have a new internist, a new neurologist, a new ophthalmologist, and a new physical therapist. none of which know me. none of which are monitoring the gap between dc and pa. i'm already providing them with an entire binder of medical records- any past issues are right at the tips of their fingers!! but at this point i don't KNOW if i'm making progress. i need someone to say "meggie, you're getting better from when i saw you on X day." or "meg, i think you're ready for a trial period of working." or "meggie, let's go down on this medication and see how things work out." or "meg, i don't feel as knowledgeable in this area- let's bring in a X dr. to take a look." i need a doctor to manage my health, not me to blindly try things here and there by trial and error alone.
a few weeks ago, we had spoken with the medical assistant at my new neurologist's office, who told us the dr. would take questions by email. this ROCKS from the patient's end, b/c you don't have to leave endless messages with secretaries, and you can provide all the background info in a consolidated format. (i totally understand that not all docs feel comfortable responding via email- hipaa and all that privacy violation bullshit.) i sent an email asking about my neurologist's recommendation in the nausea medication debate, preferring her final blessing since she is prescribing the tysabri (which is causing the nausea). i also asked her recommendation on which dr. should be the point person, per items listed above (plus any health insurance issues or work related disability issues- rules & regs can be super strict and stringent).
not only did the office manager call to tell me she doesn't take emails from patients, but she also doesn't respond to patients through phone! have you ever heard of such a doctor's office? i realize that you can't contact the dr. at every whim, but at least have a PA available to return phone calls at end of the day hours, or the dr. themselves- even if it's a couple days later! i have to make an appointment to discuss the 2 simple questions above... and it's an hour away in Harrisburg! i broke down after i got off the phone... i have been trying so hard to keep my emotions to myself. after all, crying isn't going to change everything, make all of this go away.
but dealing with my health everyday, dealing with the health care system everyday, dealing with the financial burden of insurance every day, dealing with the reps from the pharmaceutical company, the insurance company, the doctors' offices... it's just too much! i swear, anyone would wind up completely broken down by this process. it makes you think of all the people who don't have the resources i have- parents, a college education, extended health insurance (even tho it's over $500/mo)... they're definitely not extravagant resources, but they help! so how does everyone else do it? ok, i'm done being angry about this stupid issue. i'm going to bed.
i have felt in a physical downturn for the past 10 months, and if you read through my medical records, it will state that in lengthy dr.~ish terms. but for the past month, i am not sure if i'm continuing that trend? or if i have plateaued? and if i am continuing the downward trend, am i have an MS attack? am i have a flare of the supposed fibromyalgia? and if i'm continuing on the plateau, does that mean the MS attacks caused symptoms that have turned into permanent side effects? or has my body just "accepted" the pain, the fatigue, the jerking, the slow and stiff movements? have my eyes done the same? they continue to read despite the black spots and side by side double vision that comes and goes.
sometimes i feel like i am doing more work than the doctors are- i'm way more on top of my medications (37+pills a day), and am usually the one suggesting treatment plans. on days like today, i would swear that the medical profession purposely doesn't answer questions directly so that he/she doesn't have to be solely responsible. but the bottom line is- I AM NOT A DOCTOR. i cannot make these kinds of decisions alone- i need and want their expertise. when i was in va, i felt that i had finally gotten into a good working relationship with the doctors at Georgetown. (quite frankly, i can't imagine why they wanted to keep me as a patient, i was horrible to deal with at first exams- shooting questions, answering with snappy retorts.) but luckily for them, they did anyway :) i had an internist acted as a quarterback- spoke with my other doctors, always available via email and phone, on top of my progress and any declines. he would monitor my pain medications, and refer me to a specialist at any moment he felt things were beyond his jurisdiction. my neurologist had determined most of my problems with MS related, not helped by being tossed around between specialty dr.s for much of '06. he felt an aggressive approach was necessary, which i embraced whole-heartedly.
but now i'm in a new state. i have a new internist, a new neurologist, a new ophthalmologist, and a new physical therapist. none of which know me. none of which are monitoring the gap between dc and pa. i'm already providing them with an entire binder of medical records- any past issues are right at the tips of their fingers!! but at this point i don't KNOW if i'm making progress. i need someone to say "meggie, you're getting better from when i saw you on X day." or "meg, i think you're ready for a trial period of working." or "meggie, let's go down on this medication and see how things work out." or "meg, i don't feel as knowledgeable in this area- let's bring in a X dr. to take a look." i need a doctor to manage my health, not me to blindly try things here and there by trial and error alone.
a few weeks ago, we had spoken with the medical assistant at my new neurologist's office, who told us the dr. would take questions by email. this ROCKS from the patient's end, b/c you don't have to leave endless messages with secretaries, and you can provide all the background info in a consolidated format. (i totally understand that not all docs feel comfortable responding via email- hipaa and all that privacy violation bullshit.) i sent an email asking about my neurologist's recommendation in the nausea medication debate, preferring her final blessing since she is prescribing the tysabri (which is causing the nausea). i also asked her recommendation on which dr. should be the point person, per items listed above (plus any health insurance issues or work related disability issues- rules & regs can be super strict and stringent).
not only did the office manager call to tell me she doesn't take emails from patients, but she also doesn't respond to patients through phone! have you ever heard of such a doctor's office? i realize that you can't contact the dr. at every whim, but at least have a PA available to return phone calls at end of the day hours, or the dr. themselves- even if it's a couple days later! i have to make an appointment to discuss the 2 simple questions above... and it's an hour away in Harrisburg! i broke down after i got off the phone... i have been trying so hard to keep my emotions to myself. after all, crying isn't going to change everything, make all of this go away.
but dealing with my health everyday, dealing with the health care system everyday, dealing with the financial burden of insurance every day, dealing with the reps from the pharmaceutical company, the insurance company, the doctors' offices... it's just too much! i swear, anyone would wind up completely broken down by this process. it makes you think of all the people who don't have the resources i have- parents, a college education, extended health insurance (even tho it's over $500/mo)... they're definitely not extravagant resources, but they help! so how does everyone else do it? ok, i'm done being angry about this stupid issue. i'm going to bed.
1 comment:
I just did some catching up on my reading and what a rollercoaster. The past three posts were happy, sad, funny, sentimential, emotional. Better than any book I've read or movie I've seen (Blades of Glory was close but lacked the sentimentality found in "i get by…” I hate that you are having a bad month (few months…). I must increase the positive energy expenditure toward PA. I'm on it! Things should improve soon.
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