Scheduling Issues

[bulldogpride02]

Is it just my ID Doc & Nurse or does anyone else have this type of issue?

 they think i have no life outside of the clinic, i work 40 + hrs a week, i comply with my meds i go to every appt they give me, even when i dont want to; but they want to do all these special procedures (i just found out this morning) and the DR told me we would wait till MON to schedule anything till i got back from my trip to chicago this weekend, but his nurse just calls and tells me, Well i setup your Xrays for Wednesday Morning at 9am, and we can do your head CT anytime today before 530 (when i have to be at work in an hr) and do a blooddraw on Saturday.

I was like, umm, NO (First time i ever told them NO, and damn it felt good) i told both of them this morning i was going out of town this weekend and the DR told me directly i was to touch base with his office on monday once i knew my work schedule for the week to setup all the appts, hopefully for 1 day, that way im not trekking up to the hospital every day for a week for 1 stupid thing after another.

They do this to me constantly, my last Peak and Trough for my Fluconozol they changed the date at the last min, called me while i was at work and left me a vm telling me i had to be at the hospital the following morning when i work till midnight and i wound up having to make 2 trips thru town during a snowstorm to the hospital to have my blooddrawn twice, then get to work. Its infuriating!

He wont help me get approved for ssi, so i have to work, they KNOW i work nights and yet they continually keep scheduling me for appts for things on various dates and times that i simply cannot keep up with and get the rest i need, ESPECIALLY since the atripla knocks me out and makes it extremely hard to wake up early in the morning after 6-7 hrs of sleep

[coreFighter]

I know it's frustrating, it's also really great that you're communicating it. But it sounds like you're getting really good care. I have to fight for them to test me for anything that isn't part of the basic HIV panel and it's taken them months to even consider my heart palpitations and actual symptom because they just won't do the tests they need.

P.S. I also had no clue, that HIV would be so labor intensive, it's so much harder to deal with, then just take a pill. What's really tough is dealing with the bureaucracy it generats.

[Ann]

I know it's frustrating, it's also really great that you're communicating it. But it sounds like you're getting really good care. I have to fight for them to test me for anything that isn't part of the basic HIV panel and it's taken them months to even consider my heart palpitations and actual symptom because they just won't do the tests they need.

P.S. I also had no clue, that HIV would be so labor intensive, it's so much harder to deal with, then just take a pill. What's really tough is dealing with the bureaucracy it generats.

Core, yes, living with hiv can be a full-time job. It's not for the faint of heart.

Have you considered going to a GP for your other problems? Where I live, my hiv clinic will no longer serve as a one-stop-shop for whatever ails you. I have to go to a GP for things not directly related to hiv.

You may have to shop around for a GP who is either knowledgeable about hiv, or at least one who is willing to learn. Mine fell into the latter category and I couldn't be happier with him. In fact, he is due to retire in the next few years and I'm dreading breaking in a new GP. 

Also, you may need to give your GP and your hiv doc explicit permission to share information between them. I've done this and whenever my GP is concerned that something may be hiv related, he rings my hiv doc and they talk it through together. It works well for me.

[MilburnCreek]

As with any medical condition (especially chronic ones) You MUST be your own advocate.  You MUST say "NO," and YOU must be in control of what treatments and procedures occur and what times.  We are so used to 'following orders' and 'doing what we're told' that we lose sight of the fact that *WE* have the ultimate say in how we treat our own body.  Insist on a regimen that works for you and doesnt drive you crazy....