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Well, I saw my doctor  (for about 5 minutes) yesterday.  My Nurse Practitioner had spent some time with me, listened to my lungs, etc.  My REAL doctor, (of 18 years, in Atlanta) used to tell me "you know your own body better than anybody".   I sure don't get that statement from my current doctor(s) anymore....I started Prezista, and gained about 15 lbs.   So, my COMMON SENSE tells me that perhaps that drug needs to be changed for something else....but NO WAY, according to them.   I need to walk, workout and eat less (maybe a salad each day?  who knows) to try to lose this.  I even asked to go back on Viramune and Truvada, but that was also disregarded.

Us LTSers are bumped out to 6-month and 1-yr appointments, while they make time and room for all the newly diagnosed and those new to our clinic (from a closed county facility, about 850 of them!) with all their needs, and serious health issues from having untreated HIV disease.   Every study that is advertised and everything that is promoted seems to be about "keeping them in care" and "getting them in treatment" and "helping them stay adherent to their meds".   All of these are GOOD and ADMIRABLE things, and I am FOR all of it!  It just seems that they have pushed us out of the way, or at least that is how it feels.  Us who have tried to take care of ourselves, be compliant and educated about our disease, and have tried to do all the RIGHT things are now in the backseat.

Well, you know I have always said that AIDS is a journey we are all on together; it's just that some of us are travelling in different ways!   I have now moved from the backseat of my 1978 ratty Chrysler Cordoba to an old lawnmower trailer, being pulled behind it; it has a floppy rear gate, no tail lights, no tag...and I am being drug along by my fingertips holding on for dear life to the floppy rear gate....

HUGS to all,

Jeff G:
I just need the visual of soiled nickers for the last part of your post to burned into my mind .

I go to the same clinic as Alan and its true , we seem to be rolled onto the back burner there and it can be frustrating at times . Hang in there Alan , 10 doctors will come and go before you are done with that clinic , we seem to get new doctors about once a year .

Yes, Jeff you are right; I am on my 3rd one since 2007.   Please forgive me for my "rant", I certainly am grateful for the care I receive.  I also feel like my providers are probably doing the best they can, in a tough situation.  There are just TOO MANY people, and too few doctors/nurses.

What I did not mention was that I look GREAT, on paper.  CD4 in the 600+ range, at 34%, and undetectable VL.   I'm sure that is the biggest factor in them pushing me out to 6 mos. for my next visit. 

I am just having trouble making the mental "switch" from the message of our healthcare providers, from "be educated, be compliant, PARTNER with your doctor, and stay involved in your healthcare" to "we need to bend over backwards to get people into care who don't want to be in care, and who won't take their meds or keep their appointments".   Now, do these people need help?  CERTAINLY.  I am 100% for helping ANYONE with hiv, and all of us deserve care and treatment.  It's just that I am feeling the "back burner" syndrome.

So my journey continues....

Jeff G:
OH Alan , its not a rant and I agree totally . I don't think our doctors appreciate what 30 years of inflammation does to a body , I doubt most people can understand unless you have lived the life . 

It was only in the last few years that doctors begrudgingly admitted that LTS and chronic pain for complications due to inflammation and other factors was valid and not all in our heads .

My numbers mostly look good on paper but I struggle every day , I know you do too .     

I totally agree with both Alan and Jeff.  These doctors do not really know the full effects of long term HIV and how it feels, the changes that happen to the body, mind, etc. 

And yes, there are too few doctors specializing in HIV anymore.  We only have a few and too many people.  And trying to keep track of everyone taking their medication is not something I can feasibly do, even though it may be a "written part" of my job.  I do ask when I talk to clients, but there are so many clients, and not enough of us to work with them as intensely as they need.  Not enough money.  Isn't that always the case?

And Alan, thanks for your pm about SSA and work reviews.  They certainly scare the hell out of people.  I was expecting them to get back to me by now, since they only gave me 14 days to get the information back.  The waiting continues.....


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