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Get a New Doctor? Be a Better Patient?

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oksikoko:
Hey, everybody.

When I started posting here in December, I was just killing time. Now I feel like it's the only thing between me and a bullet sometimes. I haven't put you up to a Turing test, but even if you're a machine somewhere generating posts and answers, that's fine by me. I just don't know what to do half the time, and I don't know who to ask. Frankly, the bullet sounds nice, I'm too chicken, and I don't have one anyway. Barring that, I want to go crawl under the couch and stay there until the building falls down someday. Improbable. So I'll ask you for more advice instead. Or maybe it's just venting. I don't know. Thanks.

I just came back from the doctor. I don't know exactly how, but this doctor-patient relationship has gone completely off-track. I felt sort of OK this morning. Now it's agitation and shame, but I don't know why.  I'm also not sure which thing I did if I did (but I probably did). But let's move forward.  I've only been there three times: the day I was diagnosed, a week later to get VL/CD4 numbers, and today. If I'm going to switch, I should do it now. I'm not sure how to find a doctor who'll work with my ADAP situation, but I'll do some research in a minute. Everyone else manages it somehow, so I can probably figure it out. This is the first time I've had a doctor since I was a kid, so maybe this is all normal and my expectations are wrong.

When I went in for the first appointment, I answered everything truthfully, including questions on drugs. I  wish I hadn't. I haven't been there since December, and the first question is on that. It threw me a little, but I didn't want to seem startled or I was afraid I'd look guilty of something - which probably made me look guilty of something. It's hard to get out of those sorts of loops when they start.

He asked me how I was feeling. I said I was doing aright, but I'm really stressed about the housing situation and the unemployment situation and that I'm afraid I'm going to start having anxiety and panic issues again - it's completely exogenous, and I'm trying to be responsible and point it out to someone who could help prevent it. He tells me I should see a therapist (not in a dismissive way) and changes the subject to my weight. We check it, and since I haven't lost any more, we moved on to what sounded like the end of the visit. I had a list of things I wanted to ask written in Notes on my phone. We hadn't talked about the pills, so I brought it up and asked him if other people had mentioned feeling 'speedy' for a couple of hours after they take it. I've mentioned that on here: racing thoughts, too much energy, can't sit still. He seems surprised and says no. But it's a sort of, "I have no idea what you're talking about" kind of 'no', so I let it go. An uncomfortable feeling starts pushing in from each shoulder.

None of my side effects (if they even are side effects) are major, but the vertigo and the pain in the kidney areas might be indicators of something. Or maybe not. I dont know, but I wanted to ask someone who might know. But I just didn't feel comfortable asking anything else. So, there was silence for a while while he had some computer issue. They fixed it, and I get a new prescription for three months of Stribild. I'm on hold with that Optum mail order place right now, since they won't let us lepers near normal people at the pharmacy.

Just before I was about to go I decided to try again and said something like: "So, no one has said anything about this buzz that they feel right after taking the pill? It happens every time, and I just don't know if it's me or what." He closes the door and tells me that mine is a confusing/difficult case because there's "so much going on there", like the drugs... So, OK, that's a conversation stopper. There's nothing I could do or say at that point. I'm just a junkie poz whore to this place because it's on a note somewhere from the day I first showed up. They could at least add that my name is "Lee" on that note and stop calling me by my first name. But that's just me being bitter, and I don't want that.

I had thought I would come in, go over my list, he would check that everything's OK with the prescription, maybe some kind of test to see if Stribild is working, etc. The insert says you should monitor kidney function more with this stuff, so I thought maybe some questions or a urine test of some kind. I figured I'd apologize for missing my pill once (ugh, it happened on Friday - I wanted a perfect track record), and he'd say it's OK, but be more careful. etc. etc. But he wrote me a new prescription and said I should come back in 5 weeks. That's it. I guess that's standard timing. I don't know about that stuff, but I didn't really feel comfortable questioning the process.

So, anyway, other people on here say it's a great place, and it's not that big so it could even be the same doctor. So, it's highly likely just that I'm really difficult to work with. I want to find a new doctor, but at the same time I'm worried now that it's just something I'm doing that makes this go so wrong. If it's me, it's pointless to get someone new and just repeat this same process. Is there a way to be  better patient? Is that even possible?

Blah. One thing I know is that I would never have survived the 80s and 90s. I can't even manage living with HIV now!

texaninnyc87:
Sorry to read all of this. It sounds to me like your doctor kind of sucks.

As you know, I am also on stribild. I noticed the buzzy high feeling a few hours after taking it but its gradually stopped all together. at first, i would exercise to get through it, that worked well. after  a few weeks its pretty much gone. i mentioned it to my doctor and we talked for a while about it. she said theres nothing really to show why thats happening. like, people know sustiva does that. since mine has gone away, we havent discussed it again.

Also like you, I was very honest with my doctors about drugs and alcohol when i first went in. They pretty much ask me about that near the beginning of every visit now. I think thats just the way doctors have to be about that stuff, so i wouldnt take it too personally. Luckily I've quit smoking cigarettes, cut back my drinking significantly and only smoke a little weed now so they're pretty pleased about all that. doctors have tons of patients. any warnings that they have about something damaging that they know about your health goes into your file as a red flag. i dont think it's very easy to get rid of those flags, so you cant blame them for harping on that stuff.

Because of how new stribild is and the kidney stuff. my doctor is monitoring my kidney functions VERY closely. It's kind of alarming that yours isn't? After two weeks on it she did a check up on me, poking around my stomach, chest and back, asking if i'd had any pains, listening to my insides with her stethoscope. then she did a blood draw and a urine test. shes going to do this every month for the first three months im on it so that shes satisfied with my bodies reaction. tomorrow, one month after my first dose of stribild, im getting my cd4s and vl checked to make sure its working well. its worrying that your doctor didnt ask about the kidney pains you were having. mine asked me SO many questions about that and wanted to know all about my piss and stuff.

i think you should get a new doctor. i dont know where you are now. im really happy with the care at mt sinai but you seem to think you cut your ties with them? why dont you go to the GMHC and talk to them. see if they can refer you. also i think you really need to chill out with the self loathing. i doubt any of these people you think hate you really do. you're probably only making situations more strained by imposing this super self conscious nervousness on all your interactions. again, i think some therapy would really help you.

hope this was somewhat helpful and you can start getting the care you need.

PS. I get my stribild every month from DUANE READE and im also on the ADAP. im sure you can work out a way to avoid the mail order.

Buckmark:
Okikso,

Your doctor would be remiss if he didn't ask you what drugs or medication you take -- recreational or otherwise.   It is certainly possible that he is (overly) dismissive of your concerns because he ascribes them all to drug use.  But he does have to consider that as he is evaluating your situation and symptoms.  The only way to get some satisfaction, and answers, is to ask him directly.  That might sound hard to do, but doctors (like therapists) have mostly heard it all.  And doctors have lots of people vying for their attention, so sometimes you gotta speak up to make sure they are paying attention.  Being frank with your physician is a great way to see if he has the "chops" to cut it as your physician.

It also helps if you are at least somewhat cooperative with your doctor.  It is a doctor-patient *relationship* as you said, and both parties have to contribute.


--- Quote from: oksikoko on February 05, 2013, 06:35:17 PM ---I just don't know what to do half the time, and I don't know who to ask. Frankly, the bullet sounds nice, I'm too chicken, and I don't have one anyway.

--- End quote ---

I'm hoping that you were just mentioning this in passing, but I don't take any reference to suicide lightly as I've lost too many people that way.  If you are ever at that point and don't know what to do or who to call, go to the ER and ask for help.


--- Quote ---I'm on hold with that Optum mail order place right now, since they won't let us lepers near normal people at the pharmacy.

--- End quote ---

It's the wave of the future, not just for lepers.  Lots of people only have the option of mail order pharmacies for their long-term medications. It kinda blows.

"You're call is important to us..."   ::)


--- Quote ---He closes the door and tells me that mine is a confusing/difficult case because there's "so much going on there", like the drugs... So, OK, that's a conversation stopper. There's nothing I could do or say at that point.

--- End quote ---

Au contraire.  Speak up.  He was honest with you, so respond in kind. Tell him not to dismiss you.  Ask him to make the correlation between your drug use and your symptoms.  And listen carefully to what he has to say.


--- Quote ---So, it's highly likely just that I'm really difficult to work with.

--- End quote ---

This is a point you've made before, so I'll accept it as fact.   ;)  What do you want to do about that?


--- Quote ---I want to find a new doctor, but at the same time I'm worried now that it's just something I'm doing that makes this go so wrong. If it's me, it's pointless to get someone new and just repeat this same process. Is there a way to be  better patient? Is that even possible?

--- End quote ---

My goodness you take this all so personally.  Give yourself some time to get used to having HIV, working with a doctor, and become a better patient.  Usually that means being honest about what is going on with you, insisting on answers rather than being dismissed, and thinking hard about what he tells you.  He's not necessarily going to tell you what you want to hear.  But, that's the stuff that usually is the most pertinent.


--- Quote ---Blah. One thing I know is that I would never have survived the 80s and 90s. I can't even manage living with HIV now!

--- End quote ---

You'd be surprised what you can survive.  ;) 

Regards,

Henry

RobbyR:
Hey oksikoko, I can relate. I have had a couple of shoddy doctors in the past, and what I would say is DON'T SETTLE! Life is too dang short to not feel totally 100% comfortable with your doctor. In my situation, I have an HIV doctor, plus a seperate primary care doctor, who handles the every day stuff. My primary care doc I have done to for years, she is wonderful, great listener, always takes the time to talk to me, etc. However, I have gone through a few HIV docs before I found a good one. The first one was good, but she left for a different state a short time after I started going to her, so they put me with a new guy. Well, you know how when you go on a date and within the first 5 minutes you know it ain't gonna work out? Yep, that's how it was for me with that doc. He was cold, uncaring, and rude, plus pretty creepy. I immediately asked for another doc. My personality is outgoing, blunt, conversational, and this doc was none of those things! Don't you hate when you have a doctor who makes you feel rushed and like you're committing a federal crime if you ask questions! Needless to say they got me a different doctor, and she is great. Very nice, funny, great listener, and always answers all my questions.

I would say everyone has the right to ask for a doctor who meshes well with their personality. Especially HIV docs, since we typically only see them a few times a year, it makes having a good rapport with them all the more important. So I would say, if you feel uncomfortable with a doc for any reason, or like they aren't hearing you, ask for a new one! Trust me it happens all the time, and it's worth it because nothing is better than a good doctor/patient relationship. Good luck!  ;D

leatherman:

--- Quote from: oksikoko on February 05, 2013, 06:35:17 PM ---They fixed it, and I get a new prescription for three months of Stribild. I'm on hold with that Optum mail order place right now, since they won't let us lepers near normal people at the pharmacy.

--- End quote ---
many ADAP programs do mail order/delivery through a state-approved pharmacy because this saves the program buckets of money. Because they order in quantity (for all the ADAP clients) ADAP gets an extra discount, and going through one delivery pharmacy helps minimize paperwork while giving the state better quality control of the service.

It really doesn't have anything to do with us as patients - except to make it easier! Clients (who are often poorer and hence need ADAP assistance) don't have to travel anywhere; clients don't have to wait because their local pharmacy doesn't stock antiretrovirals; nor do clients have to encounter any stigma from the local pharmacist.

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