Venting....

[Lis]

Is it just me ?  It seems that every pimple has a meaning... I really love being involved in this forum , but I'm afraid that the last few months have left me less then helpful..  I'm angry.. (about folks being scared about everything.. shame on our docs for the lack of teaching and compassion)  PLEASE... , this shit IS scary.. , but today is all that any of us have...

My last ID appt (6-18-10)  I cant even start to describe.I will wait for the results for a "few" weeks... That really pisses me off.. Why can he not order labs so I have results at my appt.. (which I have to beg to get).. The lab here in my town has the same system they have ,lab wise that is .. send the fuckers an order so I can know, and you save dictation!!! 

Thank you for your time...

[AlanBama]

I hear you honey, loud and clear.

Our clinic is now pushing for us to all get our own "primary care" G.P.   While I think this might be a good thing (and I have wished many times that I had one), I think it is a little much to expect us 20+ year LTSers that take 15 or more Rx's each day to just "pop in" to a G.P. and expect them to manage us with all our problems.   Now for these folks who have never been ill with HIV, and have great counts, and take one pill a day, and see the doctor once every 6 months....o.k.  I can see it.

I understand they are overwhelmed by all of these folks' medical problems, everyone coming to them for every single thing that is wrong with them....every year, our clinic funds don't grow all that much, and yet we have to serve more and more patients.   The doctors are feeling stretched pretty thin, and I can appreciate that.

I am thankful that I am pretty 'healthy' overall, because if I was very ill, as I have been in the past, there is no way I would be able to navigate "the system" to try to get myself taken care of.   A clinic visit can easily wear me out, and I can imagine if I was having to go weekly or evey daily, like I sometimes had to in the 90's.  I couldn't hold up for it, no way.

I still think I'm pretty "tough", but it all gets scary sometimes.....copays, donut holes, pre-authorizations, coding errors.....all that on top of being very sick would be overwhelming.

Love to you Lis,

Alan

[Jeff G]

I'm having the same problem with my clinic with long waiting for an appointment or a returned phone call when something needs to be addressed .

My lipid problems and diabetes are directly linked to my long term life with HIV but I plan on letting my GP handle this from now own because I am just simply tired of begging for treatment and waiting for phone calls that never come .   

[aztecan]

Mine is a little bit different, but Lis, I understand completely.

I am a bit luckier than most because I can just walk in and see the doctor without an appointment. Its part of my job, but I have been known to toss a bit of my own problems in as well.

The down side to that is none of the stuff we discuss is in my medical records. That means the doctor, or me, thanks to my often faulty memory, sometimes have to revisit things multiple times, which is a pain.

On top of trying to manage the HIV, the lipids, the neuropathy and, now, the myopathy, the indecision about what meds to take, or that I should switch, or shouldn't switch,  the cost is really getting me down.

Thank goodness someone here put me on to the Isentress assistance program. That is the only way I have been able to afford my meds the last several months. The pharma company that produces Isentess actually paid $150 of my monthly copay for my Isentress.

I have to say, it was a godsend.

But July was the last month for it. Now its back to paying the full copay. I put the max in my flex account, $3,600 a year, but that ran out in April, more than two months before the end of the fiscal year.

I put another $3,600 in for this year, again, the max they will allow me. I hope it sees me through. Sorry to get on my soapbox.

Lis, living with this stuff stinks at time, as Alan said.

HUGS,

Mark

[AlanBama]

Lis,

How are you doing honey?  Just wondered if you've found out anything further from the lab tests....

Also, it bothered me when you told me you don't drive anymore.  I know how that feels, and it sucks.
I am so thankful for having a vehicle (paid for!) that I can get around in....the old folks in this town get on my nerves, crawling along....hell, when I get behind the wheel, that's the one place I am 21 again!
I know I'm an impatient driver -- guess that comes from years of living in Atlanta.

I'm glad you have your family, and hope they are able to get you to all your appointments, etc, without too much stress.   I know you have to travel a long distance.   I travel an hour each way for my care, and even that amount of distance sucks, big time.

Check in with us when you can

Love & hugs,

Alan