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Author Topic: o hai guys! Let's chat about AIDS!  (Read 7672 times)

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Offline Miss Philicia

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o hai guys! Let's chat about AIDS!
« on: January 29, 2014, 10:08:38 PM »
1) my cd4 count is 1504 / 55.7% / VL <20

2) those numbers mean very little because:

3) my liver numbers are now elevated to the extent that I must have an ultrasound done on Monday to see if I have "non-alcoholic fatty liver" due to 20 years of being on NRTIs. linky for what NRTIs can do to you

4) Doctor also ran some other blood tests after my appointment I think just to check that my hepatitis A/B/C stuff is OK and maybe to make sure my AST and ALT numbers are double checked -- fyi my ALT numbers have been elevated for the past year but only slightly, so he had been monitoring them. My AST numbers were elevated for the first time this past test. It's possible after all is said and done this will mean nothing except further close monitoring.

5) I've now been diagnosed with HIV-related osteoarthritis and a) start physical therapy tomorrow and b) have to have my knees x'rayd also next Monday c) I've really had this knee issue for at least 4-5 years, but it's gotten worse. I thought it was connected with my podiatry problems and would settle down after I had those foot surgeries but in the back of my head I always knew I was making that theory up, and now my arthritis has spread to my entire leg and toes -- it's quite painful, effects the muscles in my legs as well, and makes me so tired that after being awake for 6-7 hours I lay down on the sofa and fall asleep in five minutes for an hour nap on a daily basis. I think I should complain louder about the pain issue but then again I don't want to become a pain med user until I really have to so I try to grin and bear it.

6) depending on the X-ray I'll probably start seeing a rheumatologist and get something injected in my knees... or something -- kinda forget what my doctor said about that part

7) was instructed to take Chondroitin sulfate (o.t.c.) daily @ 250mg but could only find 500mg so that's what I bought.

8) It's not like I don't get any exercise for a almost 49 year old, seeing as how I walk up and down 3 flights of stairs every day, plus two more when I take the subway, and walk everywhere I need to go since I do not own a car. I guess if physical therapy shows me some improvements I'll need to find some way to budget money for a gym membership but those are not cheap, and hardly any of them are ones with a pool because they are all cramped, urban gyms. I am hesitant to commit to a membership when I'm tired so much of the time.

9) I've found a new colorectal specialist that does HRAs that doesn't necessitate taking and hour and half to get to -- this one is at Drexel Univ. so that's a mere 25 minutes by subway. Thrilling!

10) I'm going to NYC in a week so it's not like I'm going to die. But hey, maybe I should finally draft a will and all of those other paper document thingies grave dodgers like me are supposed have filed away somewhere. That's right, I've had general anesthesia five times since 2011 without a durable power of attorney -- bite me.
« Last Edit: January 29, 2014, 10:12:44 PM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline zach

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Re: o hai guys! Let's chat about AIDS!
« Reply #1 on: January 29, 2014, 10:54:57 PM »
sorry to hear about your difficulties ms p. i know you've had a hard time of it over the years, and have withstood it all with style, grace, nobility

Offline Theyer

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Re: o hai guys! Let's chat about AIDS!
« Reply #2 on: January 30, 2014, 06:14:03 AM »
It seem like a further twist that you can receive great CD4 no and yet the rest follows, good luck with it all . RE , Gym/pool etc have you not got a decent Y that provides the above without the prices off the happy shiny places? Good luck with it all D,


Best wishes
m

"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline BT65

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Re: o hai guys! Let's chat about AIDS!
« Reply #3 on: January 30, 2014, 11:37:25 AM »
I did physical therapy for the AVN and osteoarthritis in my knees, and it did no good.  Sorry to deliver not so good news.  But maybe it will work for you.  The only thing that works for me anymore is quarterly Cortisone injections.  In fact, I'm getting one today in my left knee, in an hour.  Let me know how the Chondroitin works for you, if it does I may get some. 

Good luck with all your issues, you're dealing with a lot.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #4 on: January 30, 2014, 12:58:33 PM »
I just got back from my physical therapy intake/assessment. At least they hooked me up with the cutest guy on staff  :P

My issue is more than just my knees, it's everything from the waist down basically. It's just the knees are the more abnormal thing with the wobbling, so hopefully the X-ray will rule out something like you deal with Betty (necrosis). Or I think that's why I am having it done.

It will be another two weeks due to my upcoming trip before I actually begin sessions so he gave me some stretching exercises to do. Dunno, I'm a bit hopeful that this will help my situation some. I'm not looking for a cure nor do I expect one, that is for sure.
« Last Edit: January 30, 2014, 01:21:17 PM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline WillyWump

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Re: o hai guys! Let's chat about AIDS!
« Reply #5 on: January 30, 2014, 01:15:47 PM »
I just got back from my physical therapy intake/assessment. At least they hooked me up with the cutest guy on staff  :P

I saw your checkin at the gym, and i thought surely that was a mistake and that you were at the deli next door.

please focus on your thereapy, and not filling the holland tunnel.

Sorry you are faced with all this.

POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
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Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #6 on: January 30, 2014, 01:23:12 PM »
I saw your checkin at the gym, and i thought surely that was a mistake and that you were at the deli next door.

This gym is so fancy they even have an old man on staff to shine your shoes.
"Iíve slept with enough men to know that Iím not gay"

Offline BT65

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Re: o hai guys! Let's chat about AIDS!
« Reply #7 on: January 30, 2014, 04:51:57 PM »
I got the Cortisone and it is instant relief.  I know I've told you Ms P, that my feet do not sit flat on the floor, but who knows what that is.

I asked the doctor about Glucosamine and he said I could try it.  I hope you have good luck with your physical therapy.  I get it.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Jody

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Re: o hai guys! Let's chat about AIDS!
« Reply #8 on: January 30, 2014, 08:13:06 PM »
Hoping you feel better with the therapy.  Is there a 'Y' in your hood which might have a pool?  Having HIV and getting older is not easy on our bodies, that's for sure. It would be nice to hook up while you are in NY next week but I'll be headed down to Ft. Lauderdale next Thursday. 

Hugs,

Jody
"Wake up to find out that you are the eyes of the world".
 "Try to discover that you are the song that the morning brings."

Grateful Dead

Offline tednlou2

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Re: o hai guys! Let's chat about AIDS!
« Reply #9 on: January 30, 2014, 10:36:37 PM »
How much does HIV, itself, contribute to fatty liver?  I have it and haven't been on meds yet.  My gastro doc believes HIV may be a contributing factor.  But, many have it, due to diet and being overweight.  I did get chunky, but nothing like I would think would lead to fatty liver disease.  But, perhaps I'm not appreciating whether just being somewhat overweight can cause it.  I know being overweight is not a factor for you. 

Do you have a dull ache under your ribs?  That is what prompted me to get checked.  It was that dull ache and feeling of pressure.  My liver labs are usually closer to the upper end of normal.  I was told the upper limit use to be 30, just as recent as the 90's.  However, that was increased.  The doc said many gastro docs believe it should be lowered back down to 30 as the upper limit.

Offline Andy Velez

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Re: o hai guys! Let's chat about AIDS!
« Reply #10 on: January 31, 2014, 08:32:33 AM »
Hope the stretching and other suggestions prove to be helpful.

Another example of the many challenges that come with living with HIV while a lot of civilians including politicians prefer to insist it's a manageable disease.

Thinking of you. You've got grit, Ms. P.

 

 
Andy Velez

Offline mitch777

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Re: o hai guys! Let's chat about AIDS!
« Reply #11 on: January 31, 2014, 01:01:44 PM »
Geez I've been missing allot of threads lately.

Like you, my numbers are very good although not nearly as good as yours. (cd4 count is 965/ 39%/ ud)

Started noticing arthritis about 5 years ago (I'm nearly 55) Just complained to my doc on Monday that it has been getting worse, especially in the knees and hands. Still seems pretty mild in comparison with what you are facing Miss P.

I've seen how much you need to walk. Hope you find some relief!

Not sure what to say about your high liver enzymes. Hope they can figure it out or maybe it was just a temporary blip. Ugh.

Nice to hear you found a butt doc closer by.  :)

Yup, it just goes to show that numbers aren't the whole picture.

Have fun in NY!

m.

31 years hiv+ (oct. 2013) with a curtsy.

Offline wolfter

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Re: o hai guys! Let's chat about AIDS!
« Reply #12 on: January 31, 2014, 01:17:33 PM »
You older guys are scaring the Jahebus out of me.   ;) 

Those of us living with this virus for so long can attest to the "manageable" aspect.  Some days it almost seems not worth it but we continue clawing our way towards old age.

Sorry you're dealing with these issues and I hope you get some much needed relief.

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #13 on: January 31, 2014, 01:25:07 PM »
You older guys are scaring the Jahebus out of me.   ;) 

I'm still the same age that you are for another six days.
"Iíve slept with enough men to know that Iím not gay"

Offline pittman

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Re: o hai guys! Let's chat about AIDS!
« Reply #14 on: February 01, 2014, 09:05:56 AM »
Yikes! Not sure what to say, other than wishing the best for you.   

Have fun in NYC, I always love visiting there. 

(And if you ever run into a band of gourmet cannibals talking about craving p‚tť, RUN as fast as those knees will take you!)

Offline GSOgymrat

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Re: o hai guys! Let's chat about AIDS!
« Reply #15 on: February 03, 2014, 10:58:50 AM »
Sorry to hear about the arthritis in your feet and legs. I've heard that came be really painful. I hope you have a good time in NYC.

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #16 on: February 04, 2014, 12:34:39 PM »
So I traipsed to Pennsylvania Hospital (my fave!) during the height of yesterday's snowstorm (this city doesn't shut down!) and had both my knees x-ray'd and my abdominal ultrasound done, so that's all complete.

And just now I received a call from my Med-D insurer and they approved the previously denied prescription for Celebrex after I made an appeal last week so that is good news. Frankly though, my doctor gave me naproxen while we were waiting on the appeal and I really can't say it helps much, at least not in my feet, maybe some in my knees though I am also taking chondroitin sulfate 500mg twice daily.

I'm also tending towards canceling my trip to NYC because of the large Feb 8-9th snow storm. It wouldn't interfere probably with my actual intercity rail travel but I don't want to be in NYC confined to snow boots sloshing around on the streets or being confined to my friend's apartment the majority of the trip either. So I'm thinking of yet anther birthday home alone watching a movie and going to NYC in mid/late-April when the weather is nicer and it's the height of RAMPS season (and fiddlehead ferns and morels).
"Iíve slept with enough men to know that Iím not gay"

Offline Theyer

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Re: o hai guys! Let's chat about AIDS!
« Reply #17 on: February 05, 2014, 09:10:41 AM »
When will you get the results?
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #18 on: February 05, 2014, 09:24:05 AM »
This hospital is part of the larger University of Pennsylvania hospital system, and they turn results around quickly I think, no more than a couple of days. Plus my ID doctor is on the faculty so I think he can access their computer network and get at least the summary report as soon as it's available.

I would assume he would call me if anything is super-alarming. I know he took more blood work from me to double check hepatitis status I assume last Monday and I've not received any alarming call on those.

I'm going to call the radiology department and see if they will send a summary report about my knees to my physical therapist, plus I will call my PT to say I'm not going to NYC and that we can start our sessions earlier now.
"Iíve slept with enough men to know that Iím not gay"

Offline elf

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Re: o hai guys! Let's chat about AIDS!
« Reply #19 on: February 05, 2014, 09:54:08 AM »
I am 33 and I feel 13.  :-\
I take too much melatonin (doses used in cancer therapy).
My liver is okay but it's because I take a lot of supplements for it
(artichoke extract, silibinin, choline  and ornithine); choline could help your NAFLD .

I'm taking Luvox to treat my post-HIV social phobia and fear of sex.
(Luvox, melatonin and Sustiva...feels like DMT or LSD ;D)
« Last Edit: February 05, 2014, 10:10:43 AM by elf »
Let's have a Kiki!

Offline Theyer

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Re: o hai guys! Let's chat about AIDS!
« Reply #20 on: February 07, 2014, 01:31:32 PM »
This hospital is part of the larger University of Pennsylvania hospital system, and they turn results around quickly I think, no more than a couple of days. Plus my ID doctor is on the faculty so I think he can access their computer network and get at least the summary report as soon as it's available.

I would assume he would call me if anything is super-alarming. I know he took more blood work from me to double check hepatitis status I assume last Monday and I've not received any alarming call on those.

I'm going to call the radiology department and see if they will send a summary report about my knees to my physical therapist, plus I will call my PT to say I'm not going to NYC and that we can start our sessions earlier now.

That all sounds good, though pity about NY . I often follow the no news is good news in these situations .Happy Birthday BTW.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #21 on: February 07, 2014, 02:39:45 PM »
for those of you that give a crap, here are my results/updates:

1) liver ultrasound showed the best, minimal result possible: steatosis -- this is obviously a result finally of my long-standing elevated triglycerides, even though my cholesterol numbers have always been fine generally. My office doesn't fuss over that number unless it's consistently over 300. My last ones in May were 295, and 210 seven months before that. Going back for years I see that 295 number is the highest they've been, they've usually been more like 175-210. But there's never been one "normal" reading since I've been keeping copies of my labs since 12/2004 so I'm sure it was like this when I was back in NYC. Elevated triglycerides are not uncommon for those on protease inhibitors and I've been on them for 17 years. My elevated ALT numbers (barely out of range except the last ones) only go back to 10/2012 -- there were zero elevated reading before that.

2) my knee x'ray showed mild/moderate osteo-arthritis so from my doctor's standpoint he starts with physical therapy as the least invasive effort. However, other than my knees which are less a pain issue rather than a "wobbly" stability issue, and even then only going down stairs not up, my larger issue is the (presumably) arthritic pain in my toes and other bones of my foot which may necessitate seeing an orthopedist, though I need to discuss that my feet are always cold, especially the left one, which is probably a vascular issue. Anyway, in terms of my knees it's not such a bad reading though obviously an issue.

3) I finally start physical therapy on Tuesday afternoon with Dreamy Mark B. and will do two session weekly, probably for two months. (note: most straight girls in Philadelphia look like that, unless they are alt-hipsters)

4) Part of a filling fell out of my mouth this morning during a Skype session and I was able to score a dental appointment next Thursday.

5) SUMMARY: I have seven appointments scheduled for next week which means I will be a very Busy Bee!

PS: I am now rewarding myself with a pot of single estate Assam Hattaili FTGFOP-1 and a pain au chocolate.
« Last Edit: February 07, 2014, 02:48:18 PM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline mitch777

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Re: o hai guys! Let's chat about AIDS!
« Reply #22 on: February 07, 2014, 03:03:20 PM »
Well, all of that sounds like pretty good news I guess, especially the part about Dreamy Mark B.  :)
31 years hiv+ (oct. 2013) with a curtsy.

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #23 on: February 07, 2014, 03:26:20 PM »
especially the part about Dreamy Mark B.  :)

He was also on the crew team in high school... that's kinda preppy hotness.
"Iíve slept with enough men to know that Iím not gay"

Offline Snowangel

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Re: o hai guys! Let's chat about AIDS!
« Reply #24 on: February 07, 2014, 03:33:54 PM »
Geez, glad you got the results back so quickly and I hope the therapy helps some of your pain.
Of all the things you wear, your expression is the most important

The heaviest thing you can carry is a grudge..

One thing you can give and still keep...is your word.

One thing you can't recycle is wasted time.

Offline Theyer

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Re: o hai guys! Let's chat about AIDS!
« Reply #25 on: February 07, 2014, 04:08:55 PM »
That is a good summary from all angle,s , and I think quite a lot off folk do care , How you manage 7 appointments in one week is beyond me ,but you do, so good on you. Try not to dribble during your physio , which BTW, seems to  attract , many beautiful peeps at the Chelsea and Westminster .The males crisp white polo shirts and Navy blue trouser uniform adding another layer to there shinny radiant health.
Very white sails and as you say preppy.
mhtv
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #26 on: February 07, 2014, 04:26:39 PM »
Because I'm having physical therapy and the fancy Sporting Club which is attached to the legendary Bellevue Stratford (even if Hyatt bought it out and dropped the last name) I now feel the need to purchase presentable clothing for the gym, and not show up in $3 shorts from Walmart.
"Iíve slept with enough men to know that Iím not gay"

Offline Jeff G

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Re: o hai guys! Let's chat about AIDS!
« Reply #27 on: February 07, 2014, 04:29:36 PM »
Because I'm having physical therapy and the fancy Sporting Club which is attached to the legendary Bellevue Stratford (even if Hyatt bought it out and dropped the last name) I now feel the need to purchase presentable clothing for the gym, and not show up in $3 shorts from Walmart.

Get you some of those shorts that has JUICY spelled out in rhinestones across the ass in a tramp stamp . 

Offline Theyer

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Re: o hai guys! Let's chat about AIDS!
« Reply #28 on: February 07, 2014, 04:33:21 PM »
The classier the gym the rougher the gym wear. Therefore perfect . [ apart from shoes of course ]
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline WillyWump

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Re: o hai guys! Let's chat about AIDS!
« Reply #29 on: February 07, 2014, 05:25:12 PM »
Get you some of those shorts that has JUICY spelled out in rhinestones across the ass in a tramp stamp .

PLEASE do this ^

and Sorry about your arthritis. If you need any pain pills let me know (I'm from the south)
« Last Edit: February 07, 2014, 05:28:08 PM by WillyWump »
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #30 on: February 07, 2014, 05:32:53 PM »
There actually a Juicy Couture mere blocks away from the Bellevue. But I'm thinking of going with Lululemon Athletica.
"Iíve slept with enough men to know that Iím not gay"

Offline mitch777

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Re: o hai guys! Let's chat about AIDS!
« Reply #31 on: February 07, 2014, 05:43:33 PM »
There actually a Juicy Couture mere blocks away from the Bellevue.
That was mere blocks away from where I stayed and you didn't bring it to my attention.
31 years hiv+ (oct. 2013) with a curtsy.

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #32 on: February 07, 2014, 05:48:47 PM »
That was mere blocks away from where I stayed and you didn't bring it to my attention.


Speaking of near misses -- did you hear that a Philly chef just won Top Chef this week? His restaurant is literally a stone's throw from where we had cocktails at Stateside and dinner at Noord. And now it takes three months to get a reservation on a weekend at his restaurant.
"Iíve slept with enough men to know that Iím not gay"

Offline mitch777

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Re: o hai guys! Let's chat about AIDS!
« Reply #33 on: February 07, 2014, 05:58:03 PM »
Speaking of near misses -- did you hear that a Philly chef just won Top Chef this week? His restaurant is literally a stone's throw from where we had cocktails at Stateside and dinner at Noord. And now it takes three months to get a reservation on a weekend at his restaurant.

What, no link? I think I remember you mentioning another newish restaurant nearby. Anyway, Noord was wonderful.
31 years hiv+ (oct. 2013) with a curtsy.

Offline wolfter

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Re: o hai guys! Let's chat about AIDS!
« Reply #34 on: February 07, 2014, 06:04:04 PM »
Overall, not terrible results I guess.  As for triglycerites, have you considered taking anything if it continues?  I had horrid lipid numbers including tryglicerides.  The pravastatin improved ALL my numbers to better than optimal. 

My aunt was involved in a study several years ago because of crippling arthritis.  She fingers and toes were so bent that she had little use of them.  She takes a monthly injection and saw almost immediate results.  She continues with the monthly injection and has gained the majority of her lost abilities back without pain.  Are there any options or is a "wait and see thingy?"

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Jeff G

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Re: o hai guys! Let's chat about AIDS!
« Reply #35 on: February 07, 2014, 06:16:33 PM »
Miss P's toes are so bent up when she puts her legs in the air it looks like she is throwing up gang signs .

Offline wolfter

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Re: o hai guys! Let's chat about AIDS!
« Reply #36 on: February 07, 2014, 06:35:59 PM »
Miss P's toes are so bent up when she puts her legs in the air it looks like she is throwing up gang signs .

Why am I sitting here trying to come up with a gang name for him?  Love the visual
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #37 on: February 07, 2014, 09:39:46 PM »
Overall, not terrible results I guess.  As for triglycerites, have you considered taking anything if it continues?  I had horrid lipid numbers including tryglicerides.  The pravastatin improved ALL my numbers to better than optimal. 

It's definitely an option if they go higher, like I said my doctor tends not to fuss unless they are over 300 steadily. I'll know more next time I see him in April unless he calls me with other instructions. He was out today so I was speaking with his assistant.

As far as the arthritis I'll know more after two months of physical therapy and if that shows any improvements.
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Offline Ann

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Re: o hai guys! Let's chat about AIDS!
« Reply #38 on: February 08, 2014, 05:21:02 AM »
Why am I sitting here trying to come up with a gang name for him?  Love the visual

What do you think the name "Miss P" is? A term of endearment? Don't think so!


Miss P has even been known to go all "old school" and wear her gang colours in the back pocket of her jeans. I'm not saying which side. ;)
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Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #39 on: February 16, 2014, 10:13:36 AM »
1) I had my first physical therapy session with Dreamboat Mark last Tuesday. I felt a spring in my step afterwards, did some grocery shopping. Even the next day I don't recall stiffness in the morning, or is so minimally and did some more grocery shopping (this was before out most recent large storm was to hit so I wanted to stock up on food). But once I was in for the day that afternoon and later that evening everything really seized up -- mostly my inner thigh area from doing thigh adduction machine (less so from abduction) and even more so in the gastrocnemius muscle (back of calf) -- the last no uncommon for someone with plantar fasciitis which I also have due to my high arch.

Anyway, basically I was a wreck by that time and thought myself lucky that the snow would cause a cancellation on my next PT session Thursday, but no -- Mark called wanting me to still come in. School and government offices all closed, SEPTA bus service discontinued, yet he wanted me to come in... I politely declined. I could have gotten there on the subway but I would have been absolutely incapable of doing anything. Actually yesterday was the first day I could rise up out of a chair and not feel like screaming, even though I've been trying to stretch my calves every day.

2) In other news, my visit Friday to my podiatrist revealed something new and significant. I was trying to get him to write up a summary of arthritis that he could see in my trove of three years of foot X-rays, but he said there's little there and even so it's difficult to see on an X-ray of the foot because there's so many bones, at least not until it's at a very severe level.  Then I reminded him that his office had never faxed a copy of my last NCS/EMG nerve test, so he printed it out of me. I thought it had only showed neuropathy and sciatica but in the report it states clearly that I have "B/L posterior tarsal tunnel syndrome". Anyway, googling about this (which I have only allowed myself to do twice sticking with NIH write up) is a bit of a Pandora's Box. This test was performed on me back in May though I didn't receive the results until June or early July. I'm not sure why I'm not learning about this until now except that the Physiatrist my podiatrist has come in to conduct these tests has such a thick Russian accent that he's difficult to understand.

So short story, I won't see my HIV doctor until the last week of April but will give him this report and see what he thinks. I definitely explains why I had extreme compression pain in my feet both previous to all of my surgeries and still after continuing to the present. But I also fail to understand why this didn't show up on the EMG test I had done at the hospital 3 years ago before my first foot surgery. I rather feel that if I have something more than run-of-the-mill HIV-related nerve issues that I should be seeing a specialist, as in one specific one, instead of having various tests done all over the place, especially with arthritis also potentially at play.
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Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #40 on: February 17, 2014, 05:06:55 PM »
Another fabulous update: After three hours at the dentist today, which wasn't a routine appointment in the first place (I felt something chip off last week) I now learn after copious xrays that I need a root canal, two crowns, and one other filling replaced. Aside from all the time that will take (one of the crowns might necessitate two 3-hour sessions) Ryan White doesn't seem to 100% cover everything. Basics, yes -- but the crown work has a sliding scale and evidently mine will come to $135/each. I realize for you working folk that's still a bargain but it's steep for me unexpectedly, not to mention the other time I had a crown there 4-5 years ago I was not charged.

And I already just shelled out $465 in non-covered expenses since New Year's, plus I'll probably end up paying ~$150 for physical therapy that isn't completely covered. And then I still need to have my second pair of orthotics "refurbished". *sigh* this shit never ends.
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Offline Jeff G

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Re: o hai guys! Let's chat about AIDS!
« Reply #41 on: February 17, 2014, 05:10:49 PM »
This is starting to remind me of the movie Death becomes Her . Pretty soon all of LTS are gonna be all Spackle and Bondo . 

Offline mitch777

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Re: o hai guys! Let's chat about AIDS!
« Reply #42 on: February 17, 2014, 05:42:17 PM »
I feel for you, especially after the 17 dental visits that I went through last year. Yes, it's dirt cheap but on a fixed income it can become a hardship and yes, it never ends it seems.  :P
31 years hiv+ (oct. 2013) with a curtsy.

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #43 on: February 17, 2014, 05:55:19 PM »
17 dental visits

They should have just extracted all of yours. Kenny probably would have enjoyed that.
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Offline mitch777

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Re: o hai guys! Let's chat about AIDS!
« Reply #44 on: February 17, 2014, 05:56:49 PM »
They should have just extracted all of yours. Kenny probably would have enjoyed that.
Maybe you should take your own advice. ;)
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Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #45 on: February 17, 2014, 06:10:05 PM »
Maybe you should take your own advice. ;)

Naw, my doctor said the rest of my teeth looked in fairly good shape. Of course, she sees horror stories of people showing up that haven't seen a dentist in a decade.

Part of my issues are 1) years of apnea that caused me to breathe through my mouth, and I have no idea if I still do this 2) decades of HIV meds that decrease you saliva production even if I've used Biotene products religiously for 10 years 3) I was diagnosed with bruxism (nocturnal teeth grinding) in the late 90's, a product of my Valley of the Klonopin Dolls Nervous Condition. I'm on my second mouth guard but sadly I find it hard to keep up with the routine of using it and must improve on this.

I'm good about going to the dentist regularly and have been all my life, and didn't get my first cavity until I was ~30yo. I've only had one crown done previous to that, everything else was cavity work, and often re-doing older cavities. It's just this bad one today already had two fillings (2nd to last bottom right molar) and once she drilled it out it was too deep to just use a filling. And that's the one that might need two 2-hour sessions -- actually 3 if I include today's temporary work.

All of this work would amount to $2070 normally and that's not even at a "regular" doctor, but at the Univ. of PA School of Dentistry.

Did I mention that after all of that I went and had a physical therapy session followed by authentic tacos (bistec)? Dreamboat Mark says I have very good form with my squats.
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Offline Jeff G

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Re: o hai guys! Let's chat about AIDS!
« Reply #46 on: February 17, 2014, 06:13:26 PM »
I'm glad you made your physical therapy appointment this week . I was worried about you .

Offline mitch777

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Re: o hai guys! Let's chat about AIDS!
« Reply #47 on: February 17, 2014, 06:30:02 PM »

 I'm on my second mouth guard but sadly I find it hard to keep up with the routine of using it and must improve on this.


I have the same grinding problem but I'm apparently one of the few that cannot tolerate it. I know it isn't fun to wear and clean everyday but my issue is that it sets off my jaw and actually causes more pain.

The picture of Dreamboat Mark watching your squats.... priceless.  :)
31 years hiv+ (oct. 2013) with a curtsy.

Offline WillyWump

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Re: o hai guys! Let's chat about AIDS!
« Reply #48 on: February 17, 2014, 07:23:43 PM »
Good lord woman.

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Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #49 on: February 17, 2014, 07:48:53 PM »
EXCELLENT SQUATS MISS P! NOW COME OVER HERE AND SIT ON MY FACE!
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Offline WillyWump

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Re: o hai guys! Let's chat about AIDS!
« Reply #50 on: February 18, 2014, 07:42:00 PM »
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline Jeff G

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Re: o hai guys! Let's chat about AIDS!
« Reply #51 on: February 18, 2014, 07:46:11 PM »
That's great Willy ! . How did you get Miss P to butch it up for that photo ?

Offline wolfter

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Re: o hai guys! Let's chat about AIDS!
« Reply #52 on: February 18, 2014, 07:53:11 PM »
This is starting to remind me of the movie Death becomes Her . Pretty soon all of LTS are gonna be all Spackle and Bondo .

Not to mention nuts and bolts and screws oh my.  LTS status has its rewards.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline WillyWump

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Re: o hai guys! Let's chat about AIDS!
« Reply #53 on: February 18, 2014, 08:05:49 PM »
That's great Willy ! . How did you get Miss P to butch it up for that photo ?

I was sent the pic from an insider at the gym, apparently she was really trying to impress her man today with the rainbow fringe outfit  :P
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
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Offline pittman

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Re: o hai guys! Let's chat about AIDS!
« Reply #54 on: February 18, 2014, 08:43:57 PM »
Ah squats and bench press, the two best exercises for spotting.  ::)

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #55 on: February 20, 2014, 05:08:01 PM »
yet another update: After playing phone tag with my doctor (who no longer answers emails even though he states it's his preference and insists he should be getting them) I demanded he allow me to taper off of Lyrica: 1) it's not giving me any benefit in pain 2) it's caused me to gain 15 lbs (yes Jeff/Wumpass, that's a documented side effect) 3) I now am the proud owner of sexual/erectile dysfunction (yes Jeff/Wumpass, that's a documented side effect) and can't recall the last time I masturbated to completion. Actually I think if I try really hard I can get erect, but it takes so long to orgasm I give up; plus I have no interest whereas I used to perform daily or at least every other day. Note: my HIV doctor takes sexual issues very seriously saying it means the med simply isn't working, not that it's just some middling side effect and the patient should buck up and suck it in 4) it's causing acid reflux when I sleep though I forgot to mention that to my doctor -- my bad 5) a handful of narcotics with multiple refills were not thrown at me like a bag of breath mints

so... I have to taper off of it on a 7-day schedule, then (I think) my podiatrist prefers seeing what I feel like on nothing, then to perform a third nerve conduction test, then set the next treatment plan for my PN/tarsal tunnel pain. Another option down the road is to see another podiatrist for a second opinion, but thus far my HIV doctor doesn't find it necessary. I think I have some circulation issues coming into play but he fussed around taking a pulse on my foot and didn't agree, though he thinks my PN has really worsened to the point where I have a lot of sensory deficit on the front halves of my feet, top and bottom. As in he can pinch my foot in places and I can't feel it with my eyes closed, or it feels simply like he's touching my foot, etc.

Mind you, five years ago I didn't have PN at all or if I did it was very minimal. So are current meds causing this (I don't think so), is long-term HIV infection causing it, or did 90's era drugs fuck up mitochondria so bad that a patient can't see an effect like this for 15-20 years later?

Anyway, at this point I'm not even depressed about things, I'm basically just very angry. Oh, and bitter -- a bitter, angry Queen -- and since I was already one of those I guess I'm now a SuperTotes Bitter Angry Queen.
« Last Edit: February 20, 2014, 05:20:27 PM by Miss Philicia »
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Offline Jeff G

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Re: o hai guys! Let's chat about AIDS!
« Reply #56 on: February 20, 2014, 05:23:14 PM »
a bitter, angry Queen -- and since I was already one of those I guess I'm now a SuperTotes Bitter Angry Queen.


^^ Finally she got her diagnoses ... I been telling her this for years . ^^ .

Maybe your docs can figure out something to bring you relief and help you cope if it cant be cured . It sounds like you are doing everything you can . 

Offline Miss Philicia

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« Reply #57 on: February 20, 2014, 05:24:20 PM »
a bitter, angry Queen -- and since I was already one of those I guess I'm now a SuperTotes Bitter Angry Queen.

You're not as SuperTotes as I am sweetheart -- you're too drugged up.
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Offline intaglio

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Re: o hai guys! Let's chat about AIDS!
« Reply #58 on: February 20, 2014, 05:26:43 PM »
My wife sees a neurologist for her PN related to diabetes. They've done nerve conduction tests to see where the nerves stop working/start misfiring. Currently she uses neurontin to manage hers.

Maybe a neurologist is the better doctor for your PN than another podiatrist.

I haven't really paid attention through this thread. I just clicked the link for the second page Miss P. So if you've been this route, I apologize for being unhelpful :P.

Plus, I think you have every right to be angry when those who are charged with making your life better are not doing their job.
Reality is frequently inaccurate.

Offline Jeff G

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Re: o hai guys! Let's chat about AIDS!
« Reply #59 on: February 20, 2014, 05:30:40 PM »
You're not as SuperTotes as I am sweetheart -- you're too drugged up.

My doc gave me narcotics without asking when he found out we were frenemies .

Offline Miss Philicia

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« Reply #60 on: February 20, 2014, 06:18:07 PM »
My wife sees a neurologist for her PN related to diabetes. They've done nerve conduction tests to see where the nerves stop working/start misfiring. Currently she uses neurontin to manage hers.

Maybe a neurologist is the better doctor for your PN than another podiatrist.

I haven't really paid attention through this thread. I just clicked the link for the second page Miss P. So if you've been this route, I apologize for being unhelpful :P.

Plus, I think you have every right to be angry when those who are charged with making your life better are not doing their job.

My HIV doctor was pretty adamant that a podiatrist is the right specialist for this. I'm not just having run-of-the-mill PN, I have that but more significantly sciatica and tarsal tunnel syndrome. But my podiatrist is part of a larger practice -- 3 or 4 podiatrists and they have an in-house Physiatrist (Physical medicine and rehabilitation specialist) that performs nerve conduction tests. The first time I had a nerve conduction test in 2011 it was by a neurologist at a hospital.

But I will include it in my conversation with my podiatrist whether or not I should also see a neurologist.

My HIV doctor did mention going to the Rothman Institute of Orthopaedics at Jefferson Univ. Hospital but decided they'd just send me to another podiatrist. I think right now he wants me to stay with who I am seeing at least until I get another nerve conduction test done and if it shows different results. Of course I will keep him up to date via email which he never responds to or reads. (actually I should not diss my HIV doctor because I've been with him a decade and really like him, I just think the clinic has become overwhelmed with newly diagnosed patients because the infection rate here has skyrocketed).

ps: I think Hendall is splitting and I will be utterly devastated this weekend. Pass the klonnies!
« Last Edit: February 20, 2014, 06:26:13 PM by Miss Philicia »
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Offline mitch777

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Re: o hai guys! Let's chat about AIDS!
« Reply #61 on: February 20, 2014, 06:29:35 PM »


Mind you, five years ago I didn't have PN at all or if I did it was very minimal. So are current meds causing this (I don't think so), is long-term HIV infection causing it, or did 90's era drugs fuck up mitochondria so bad that a patient can't see an effect like this for 15-20 years later?


That's odd that the PN would have just began 5 years ago or so. I'm thinking it's the earlier meds or the long-term HIV (although I can't remember hearing about fairly recent PN from other LTS).

I'm sure there will be more "surprises" in the years to come from many of us that have been living with this for decades. Everyone has had different meds, different timing, and different genes so I would suspect different physical crap.

It sucks.

I hope your newly self-applied Royal Crown is temporary and depression doesn't set in.  :)

...You have had so many surgeries on your feet that I'm thinking it is likely that that is a big player here.
« Last Edit: February 20, 2014, 06:35:01 PM by mitch777 »
31 years hiv+ (oct. 2013) with a curtsy.

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #62 on: February 20, 2014, 06:41:51 PM »
That's odd that the PN would have just began 5 years ago or so. I'm thinking it's the earlier meds or the long-term HIV (although I can't remember hearing about fairly recent PN from other LTS).

I'm sure there will be more "surprises" in the years to come from many of us that have been living with this for decades. Everyone has had different meds, different timing, and different genes so I would suspect different physical crap.

It sucks.

I hope your newly self-applied Royal Crown is temporary and depression doesn't set in.  :)

I'm thinking they're all full of shit about it being connected with HIV and it's mostly this tarsal tunnel syndrome -- when I read the description of it it's exactly what I have, huge compression issues on the front half of my feet, both laterally and whatever you call the downward thing -- it's like I have furniture sitting on the front of my feet and then there's also a vice grip tight on the sides.

I'm also reading neurologist and/or physiatrist nerve conduction tests do not always give a complete picture. Some also do ultrasounds and/or MRIs to rule out other things. It's also more prone to "active" people and I'd say this all really began five years ago, maybe more -- it's as if all the city walking and incessant climbing of stairs for 30 years has caused this instead of actually making me a healthier person like it was supposed to.

I need to research this more and draw up a list of things to be queried more extensively with my podiatrist. Previously we were always focusing on recovering from my surgeries -- which were all addressing something "mechanically deficient" in my feet an an entirely different issue. Seriously, all of this makes my head swim thinking about it because there just seem to be too many issues going on in one place simultaneously. I'm sure I could go to ten specialists and none of them would agree on what is going on, that is how I feel right now. I'm just tired of it.
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Offline buginme2

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« Reply #63 on: February 20, 2014, 07:00:22 PM »
 Man that really sounds horrible.   I'm sorry your dealing with this, hope they can do something.

Offline mitch777

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« Reply #64 on: February 20, 2014, 07:09:53 PM »
and dreaded dental work to look forward to.  :(
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Offline WillyWump

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Re: o hai guys! Let's chat about AIDS!
« Reply #65 on: February 20, 2014, 07:24:59 PM »
My doc gave me narcotics without asking when he found out we were frenemies .

Thats how I got mine too
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6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
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Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #66 on: February 20, 2014, 07:42:22 PM »
At least Dreamboat Mark, who I also saw today, is getting my legs in tip-top shape at the Bellevue Sporting Club. My calves are bulging. Too bad my feet look like an 80 year old's.

His taut, lissome buttocks looked so inviting today in his trim cut pants.
« Last Edit: February 20, 2014, 07:44:41 PM by Miss Philicia »
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Offline Jeff G

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Re: o hai guys! Let's chat about AIDS!
« Reply #67 on: February 20, 2014, 07:44:23 PM »
At least Dreamboat Mark, who I also saw today, is getting my legs in tip-top shape at the Bellevue Sporting Club. My calves are bulging. Too bad my feet look like an 80 year old's.

You have only been once and blew it off how many times ? He must be good if he can do that for you in one visit .

Offline Miss Philicia

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« Reply #68 on: February 20, 2014, 07:46:16 PM »
You have only been once and blew it off how many times ? He must be good if he can do that for you in one visit .

Child please -- I didn't go during a 12-inch snowstorm when even the public transport partially shut down. I've been three times and I have two appointments next week. Seriously, go pop another pill.

More importantly he's satisfied with my performance and is seeing improvement. I'm sorry that you're so bitter that you can't move without creaking like one of your thrift store tchotchkes.
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Offline WillyWump

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Re: o hai guys! Let's chat about AIDS!
« Reply #69 on: February 20, 2014, 07:52:48 PM »
You have only been once and blew it off how many times ? He must be good if he can do that for you in one visit .

BAHAHAHAHAHAHA! True dat
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6/3/14 CD4- 736, UD 34%
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Offline Miss Philicia

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« Reply #70 on: February 20, 2014, 07:55:02 PM »
BAHAHAHAHAHAHA! True dat

More irrational babbling from the anesthetized camarilla.
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Offline Miss Philicia

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« Reply #71 on: February 21, 2014, 06:16:04 PM »
Since today was one of my "off" days from Dreamboat Mark, I decided to go to the park and do some fitness activities on my own:

http://www.youtube.com/watch?v=o-50GjySwew

ps: I also was able to masturbate this morning -- thank goodness for tapering off Lyrica and back on Gabapentin. I also did four loads of laundry and scrubbed all of my floors.
« Last Edit: February 21, 2014, 06:28:49 PM by Miss Philicia »
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Offline WillyWump

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Re: o hai guys! Let's chat about AIDS!
« Reply #72 on: February 21, 2014, 07:40:09 PM »
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline Jeff G

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Re: o hai guys! Let's chat about AIDS!
« Reply #73 on: February 21, 2014, 07:52:03 PM »
Can you PLEASE do something about your camel-toe. It's disgusting.



You think that's bad you should see the camel when its walking away .

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #74 on: February 22, 2014, 05:37:11 PM »
1) sexual function has returned
2) I have lost 5 lbs. and don't look as bloated
3) I walked 1.5 miles today
4) I am now tracking my walking with MapMyWalk app
5) I will hurt all over my body in the next few hours
6) I boycotted National Margarita Day because a) Cantina Los Caballitos was far too crowded with Passyunk Hipsters because it went up to 56F today and b) I probably should not consume alcohol while my liver numbers are elevated though I am sure I will at some point anyway
7) I am downloading more porn, having sushi for dinner and then catching up on my DVR recordings
« Last Edit: February 22, 2014, 05:41:00 PM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline BT65

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Re: o hai guys! Let's chat about AIDS!
« Reply #75 on: February 22, 2014, 06:04:47 PM »
So things are getting back to normal, save your poor feet, calves etc.   I really am starting to think your idea of you, I and Jeff living together is a good one. :)
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline mitch777

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Re: o hai guys! Let's chat about AIDS!
« Reply #76 on: February 22, 2014, 06:36:24 PM »
   I really am starting to think your idea of you, I and Jeff living together is a good one. :)

I must have missed something.  ??? LOL!  I think it would make the BEST reality TV show!  8)
31 years hiv+ (oct. 2013) with a curtsy.

Offline Jeff G

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Re: o hai guys! Let's chat about AIDS!
« Reply #77 on: February 22, 2014, 07:01:22 PM »
So things are getting back to normal, save your poor feet, calves etc.   I really am starting to think your idea of you, I and Jeff living together is a good one. :)

I have not heard this idea ... so this is how I find out HUH ? I reserve the right to moderate at home too or it aint happening LOL . 

Maybe we need a forum nursing home . 

Offline BT65

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Re: o hai guys! Let's chat about AIDS!
« Reply #78 on: February 22, 2014, 07:04:30 PM »
I must have missed something.  ??? LOL!  I think it would make the BEST reality TV show!  8)

It would make a great reality tv show, wouldn't it?  With all our different personalities together?  Fun fest lol!!

I have not heard this idea ... so this is how I find out HUH ? I reserve the right to moderate at home too or it aint happening LOL . 

Maybe we need a forum nursing home . 

Honey, you can moderate anywhere.  And yes a forum nursing home would be nice.  Hit up the guys at the top for funding, k?
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline WillyWump

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Re: o hai guys! Let's chat about AIDS!
« Reply #79 on: February 22, 2014, 07:25:42 PM »
Whenever I win the Lotto I am opening up a forums nursing home complete with scantilly clad houseboys, Friday night Strip Bingo and a 24hr Margarita Machine.

Edited to Add: Jsut to be clear, no residents will be stripping during Friday Night Bingo, only the houseboys (you're welcome)

« Last Edit: February 22, 2014, 07:31:18 PM by WillyWump »
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6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
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Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #80 on: February 22, 2014, 07:29:44 PM »
Betty and I decided that we need a singles-only SSDI-Golden Girls type place as we age with our multi-layered ailments. We just need to settle on a location now.

I'm thinking triple-wide trailer but all of the warm weather places have sucky HIV services.
"Iíve slept with enough men to know that Iím not gay"

Offline BT65

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Re: o hai guys! Let's chat about AIDS!
« Reply #81 on: February 22, 2014, 07:34:08 PM »
We need a good grant writer to get us funding, then we can reside anywhere. 

Seriously, don't you think if we stayed together we could really help each other?  We need a spa-type existence.  With the grant funding the majority of it, and the rest of the services adjusted to be affordable to those of us on SSDI.

Edited to correct spelling.
« Last Edit: February 22, 2014, 07:40:29 PM by BT65 »
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Jeff G

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Re: o hai guys! Let's chat about AIDS!
« Reply #82 on: February 22, 2014, 07:38:22 PM »
Aidsy Acres here we come .

Offline GSOgymrat

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Re: o hai guys! Let's chat about AIDS!
« Reply #83 on: February 22, 2014, 08:39:01 PM »
My goodness! I don't check the forum for a few days and Miss P has more ups and downs and ups than most people have in months.

Offline Denver Toad

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Re: o hai guys! Let's chat about AIDS!
« Reply #84 on: February 24, 2014, 06:59:29 PM »
Quote
ps: I also was able to masturbate this morning -- thank goodness for tapering off Lyrica and back on Gabapentin.

Are you serious? You can complete while on gabapentin? I'm on 900 of gabapentin 3x a day. I couldn't complete, much less rise to the occasion if I had to. I'm way too young to spend the rest of my days as a medicinal eunuch.

PN just as others. I've wobble like a weeble at the end of the day. Tried Lyrica and pffft, nothing. Gabapentin, excepting the headaches and dead wood, helps some.

Sorry for the hijack. I'm jealous and needed the vent.
Life is short, Break the rules, Forgive quickly,
Kiss slowly, Love truly, Laugh uncontrollably, And never regret anything that made you smile.

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #85 on: February 24, 2014, 08:19:01 PM »
I'm not on that high of a dose of gabapentin and also wasn't before trying Lyrica. I never had problems masturbating on 300mg x 3/day. We'll see what happens when/if they increase the dose.

Are you still taking it or did you stop because of this issue, and if so did things return to normal sexually?
"Iíve slept with enough men to know that Iím not gay"

Offline Denver Toad

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Re: o hai guys! Let's chat about AIDS!
« Reply #86 on: February 24, 2014, 11:42:16 PM »
I'm still on it.  Dr. preaches patience and give the meds time.  I  too was on 300's prior to end of January.  Dr and neuro wanted my dose increased. I'm not finding any relief, can't see any reason to continue. 
I appreciate your discomfort. I've always been active, there hasn't been a malady, ache or pain I couldn't exercise away. Now, exercise and activities only exacerbate the pain in my legs.  Don't know if I'm stubborn or stupid but I refuse to slow down. Cycle, run,  walk the dogs daily.  Damm the neurothopathic torpedoes full speed ahead.

Do you know of anyone that's had relief from B12?
Life is short, Break the rules, Forgive quickly,
Kiss slowly, Love truly, Laugh uncontrollably, And never regret anything that made you smile.

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #87 on: February 24, 2014, 11:57:27 PM »
I'm probably not the best person to discuss "just" PN, because I also have sciatica and tarsal tunnel syndrome going on plus some residual post-podiatry surgery nerve healing. Or so I am told.
"Iíve slept with enough men to know that Iím not gay"

Offline Theyer

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Re: o hai guys! Let's chat about AIDS!
« Reply #88 on: February 25, 2014, 03:39:24 AM »
I'm still on it.  Dr. preaches patience and give the meds time.  I  too was on 300's prior to end of January.  Dr and neuro wanted my dose increased. I'm not finding any relief, can't see any reason to continue. 
I appreciate your discomfort. I've always been active, there hasn't been a malady, ache or pain I couldn't exercise away. Now, exercise and activities only exacerbate the pain in my legs.  Don't know if I'm stubborn or stupid but I refuse to slow down. Cycle, run,  walk the dogs daily.  Damm the neurothopathic torpedoes full speed ahead.

Do you know of anyone that's had relief from B12?

Have you visited a Pain Control Doctor
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline eric48

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Re: o hai guys! Let's chat about AIDS!
« Reply #89 on: February 25, 2014, 05:14:35 AM »


Do you know of anyone that's had relief from B12?
I do ...
Mobile.eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 2 months

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #90 on: February 25, 2014, 07:51:55 AM »
I just wanted to say to Denver, if a drug makes you impotent/sexually dysfunctional then it's not working.
"Iíve slept with enough men to know that Iím not gay"

Offline Irish Eyes

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Re: o hai guys! Let's chat about AIDS!
« Reply #91 on: February 25, 2014, 09:38:50 AM »
Ryan White covers dental?
I just had a crown replaced $1615.00
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      Undetectable

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #92 on: February 25, 2014, 09:58:33 AM »
Ryan White covers dental?
I just had a crown replaced $1615.00

Ryan White covers dental but only if you go somewhere that accepts it -- generally these are dental schools of major universities, at least if you live in a large city. If you are on Ryan White for ADAP then you qualify, and should get a list of dental resources that accept it from your case manager.

Actually a good HIV specialist would be one that inquires about a patient's dental needs at least during the first year of diagnosis. It's important to go to the dentist regularly when you have a chronic infectious disease medical condition.
"Iíve slept with enough men to know that Iím not gay"

Offline Irish Eyes

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Re: o hai guys! Let's chat about AIDS!
« Reply #93 on: February 25, 2014, 10:06:27 AM »
Thx Gurl.
I have 3 appts today.  @ UCSD, PA, Pharm and starting retention survey thing.
If and when I start meds I've no intention of stopping but got a cold call last week from Ucsd mentioning retention os only 30%, don't know if she is referring to San Diego only or nationwide. Wil get clarifacation this am.
Take care.
 
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      Undetectable

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #94 on: March 15, 2014, 11:56:10 AM »
So, some updates -- after being in physical therapy for a month my PT has decided that I have NO strength issues at all, but tons of balance issues that he believes are neurological in nature, and that basically my leg muscles are in a near constant state of contraction -- hence why I crash midday on the sofa. So he wrote up an interim report and faxed it to my HIV doctor -- he was delayed due to be at CROI so after talking to him on Monday he has someone on staff setting me up with a neurologist at U-Penn. I've had tests run on me for this stuff back in 2011 and last May so we'll see what a third set of eyes shows. My PT is only going to do another week of sessions and then have me come back after we know the results of these tests and what if offered to me to resolve it, because as you may or may not know Medicare has an annual cap of ~$1900 for outpatient physical therapy, though in some severe cases this can be waived.

I had more liver tests run but I didn't get an alarming call from my doctor so I guess they were fine, and I forgot to ask about them when I talked to him on Monday so...  whatever. And I continue to lose some weight post-Lyrica and sexual function is totes fine now.

Otherwise, I finished my root canal on Thursday and we all posed for an obligatory selfie. I can't believe how long this process is -- the root canal was actually a two day process, so with the first day of picking out the old fillings and gunk, and now doing a "crown build up", then the crown mold and then the actual crown that will be six visits for one tooth. Then I'll still have a cleaning, followed by work on two other teeth one of which will be another crown. I'll be trekking to that damn place the remainder of the year.



Oh, and on top of all of this three weeks ago someone in my support group passed away, and then I haven't mentioned this at all except to some people privately one of my best friends that I've known for over 15 years passed away Monday night/Tuesday morning. Last Friday I made an emergency trip to NYC to see her in the hospital. She had gotten diagnosed with a very rare form of uterine cancer back in September, had two surgeries, then declined to do chemo because she was told it was state 1 (I'm kind of dubious of this) and since her and her partner with major au naturel types decided they could use a $2500 hydraulic juicer and juice their way to a cure. By the time I learned anything about her health it had spread to her lungs and elsewhere and she'd been in an out of the hospital for five weeks. It was not pretty at all, and by the time I got to the hospital she was barely conscious and could not even talk while I was in the room. I only sat with her for five minutes, but fortunately during the previous 10 days I'd spoken with her twice on the phone, mostly in a lucid state, so I knew it was super bad and what was coming. I've still not really processed it all and didn't go to the wake last night because it would have meant another trip to NYC. Life really has a way of sucking.
"Iíve slept with enough men to know that Iím not gay"

Offline Theyer

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Re: o hai guys! Let's chat about AIDS!
« Reply #95 on: March 15, 2014, 01:02:59 PM »
I, m sorry David , I too have met the Juice will cure us problem , take care , be good to your self. love m
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline mitch777

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Re: o hai guys! Let's chat about AIDS!
« Reply #96 on: March 15, 2014, 05:00:27 PM »
David,

So sorry for the loss of your dear friend. I know there is nothing much more I can say other than yes, life can suck at times like this. 

(((Hugs)))
Mark
31 years hiv+ (oct. 2013) with a curtsy.

Offline WillyWump

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Re: o hai guys! Let's chat about AIDS!
« Reply #97 on: March 15, 2014, 07:58:55 PM »
Sorry about your friend, it sucks.

Glad your sexual function is back, maybe now you will spend more time masturbating instead of constantly trolling me via text.

Selfies in Dental chairs. Hmm.

POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline hope_for_a_cure

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Re: o hai guys! Let's chat about AIDS!
« Reply #98 on: March 17, 2014, 04:38:21 AM »
She had gotten diagnosed with a very rare form of uterine cancer back in September, had two surgeries, then declined to do chemo because she was told it was state 1 (I'm kind of dubious of this) and since her and her partner with major au naturel types decided they could use a $2500 hydraulic juicer and juice their way to a cure.

There seems to be a 'juicer' that will cure almost anything these days!  I had somebody recommend a special salad to me a few months back in lieu of chemo treatment. 

David, you have been through more these past few months than a body should have to deal with in a year or more.  I will say, you are not one to complain (although you have every right to).  All I can say is that I sure hope better times are coming for you soon. 

Again, I apologize for being so late to comment here.  My inward focus of late has kept me somewhat detached and please do not construe that as an effort to be indifferent.  Sending you my best and warmest wishes!

James

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #99 on: March 17, 2014, 02:00:35 PM »
Oh, and to the naysayers (Jefflina and Guilhermina) I have lost TEN POUNDS IN THREE WEEKS since getting off of Lyrica.
"Iíve slept with enough men to know that Iím not gay"

Offline WillyWump

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Re: o hai guys! Let's chat about AIDS!
« Reply #100 on: March 17, 2014, 06:16:26 PM »
Oh, and to the naysayers (Jefflina and Guilhermina) I have lost TEN POUNDS IN THREE WEEKS since getting off of Lyrica.

It's all that masturbating you've been doing.

PS- I know this was you ...you better lay off the Chipotle Bowls.
« Last Edit: March 17, 2014, 06:32:37 PM by WillyWump »
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline Theyer

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Re: o hai guys! Let's chat about AIDS!
« Reply #101 on: March 25, 2014, 12:09:26 PM »
How are you doing ?
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #102 on: March 25, 2014, 01:08:39 PM »
I finally got an appointment with a neurologist -- in fact it's the Chief of the department at U-Penn/Presbyterian Hospital. Unfortunately that mean a wait of two months, though I think I will call them and request to be called if they have any cancellations in the interim.

This is also my last week of physical therapy until we get results back from the neurologist. And I had my crown build-up on my tooth yesterday so only two more sessions until that is complete.
"Iíve slept with enough men to know that Iím not gay"

Offline Theyer

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Re: o hai guys! Let's chat about AIDS!
« Reply #103 on: March 26, 2014, 11:15:10 AM »
I think its worth waiting for a Doc you want , plus I like to be near the research/drug company money. Sounds like things are now going to plan , hope it continues that way, with a bit more speed.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #104 on: May 20, 2014, 03:53:25 PM »
***UPDATE***

Just returned from my appointment with the chief neurologist at U-Penn. Really nice guy who happens to do painting and printmaking in his spare time, even showing at local galleries -- and at the end he gave me someone's name in the U-Penn art department to contact about taking a lithography class to brush up on what I did when I went to college.

My preliminary diagnosis is that I do have sciatica, and he's sending for a lumbar MRI (not puncture!) that will happen Thursday morning. As far as what we though might be tarsal tunnel syndrome (which would have meant potentially more foot surgery) he ruled out and says it's just excruciatingly nasty neuropathy, but not necessarily caused by HIV or any medications -- probably more from what's been going on with my feet for years. He wants me to try out some fancy pharmacy compounded lotion that contains KETAMINE and a couple other ingredients, but I'm already running into insurance approval roadblocks -- I'll know more about that tomorrow when I call my pharmacy back. If that occurs that will be the third time in eight months that I've had a prescription denied by my lame Medicare Part D insurance company, and if that happens I will need to go through case management and see if I need to change companies which, of course, can't be done until around Thanksgiving. US Healthcare = win!

Also, the balance issues I reported from my last session of physical therapy the doctor does not believe have a neurological base, but are simply from my feet lacking full sensory capabilities. But for the sciatica he's sending me back to physical therapy for "aquatic exercises" and thankfully my fancy Sporting Club at the Bellevue has a 25-meter indoor swimming pool. I wonder if this means that Mark, my physical therapist, will be appearing shirtless in speedos with me? Can I wear my vintage 1998 chocolate brown Gucci thong for this -- or would that be inappropriate?

Oh yeah, he's also sending me for blood work for 10 things but I wasn't quite clear on the purpose of that, but I'm supposed to go back and see him in six weeks so I suppose I will know more then.
"Iíve slept with enough men to know that Iím not gay"

Online mecch

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Re: o hai guys! Let's chat about AIDS!
« Reply #105 on: May 20, 2014, 05:08:34 PM »
Apropos of nothing, I went to a beginner's pilates class tonight and the instructor was a very cute nerd jock.  He had us thrusting the pelvic bone (there was some elaborate explanation of the bellybutton and the centre) but it was an upward fuck thrust. And he was wearing these nylon shorts and then I was doing it too, concentrating on his thrusting, and I broke out laughing.
Later he came over to me a few times and was touching my body guiding me into the positions...  LOL
I dunno, physical therapy. I definitely felt better, and it has its bonus rewards...

I hope you find some relief, and the therapy isn't too painful.
« Last Edit: May 20, 2014, 05:15:55 PM by mecch »
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline buginme2

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Re: o hai guys! Let's chat about AIDS!
« Reply #106 on: May 20, 2014, 05:22:38 PM »
men do pilates?  I thought it was just cougars in yoga pants.

Offline BT65

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Re: o hai guys! Let's chat about AIDS!
« Reply #107 on: May 20, 2014, 06:29:44 PM »
David, I hope that mess with your insurance company gets straightened out.  What a bundle of things you have going on!  I can sympathize on the neuropathy and balance.  I hope the physical therapy helps.  Oh, and you can never go wrong with Gucci. ;)
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Jeff G

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Re: o hai guys! Let's chat about AIDS!
« Reply #108 on: May 20, 2014, 10:22:45 PM »
Im so sorry you are dealing with this and I know today was tough for you . I will be interested to see how the treatment works out for as I have not heard of or tried it ... it would be great if it works for you and hopefully I can give it a try and may be able to take less pain medication . Updates please . 

Offline wolfter

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Re: o hai guys! Let's chat about AIDS!
« Reply #109 on: May 21, 2014, 05:36:07 AM »
***UPDATE***

Also, the balance issues I reported from my last session of physical therapy the doctor does not believe have a neurological base, but are simply from my feet lacking full sensory capabilities.

I've often wondered if my balance issues were related to lack of sensory capabilities.  I've experienced it with both my hands and feet but obviously the feet cause more issues.  It's similar to numbess but I have no detection of it.  A complete lack of any feeling.  It's not prolonged but it still causes the occassional fall.

Is this perhaps another freebie we get for long term membership? 

I hope you get some relief from all this.  It has been a long battle and I'm sure you're over it.

greg
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #110 on: May 21, 2014, 12:42:57 PM »
A very simple test he had me do in terms of balance was to stand straight up, both feet tight together, eyes closed -- in that scenario I could not maintain my balance at all. Then he told me to open my eyes and magically I could perfectly balance myself.

Now, in terms of what I was experiencing with balance exercises in physical therapy where (obviously) my eyes were open I neglected to inquire about, but I suppose this was his way of eliminating a neurological connection and diagnosing it as a result of extreme neuropathy which has greatly decreased the senses in my feet, and specifically the front half of my feet. The back half of my feet are fine, or mostly so at least.

btw, this neurologist conducted no electromyography (EMG) tests on me. It was all verbal reporting. He also did a lot of tracking my eye responses which I'd never had done by any previous neurologist, as well as sensory readings with a pin-like wand and another that gave hot/cold impulses. However, I had two EMG reports with me -- one from 2011 and the other from 2013 so I suppose he found it redundant at this point to do yet more of those.

ps: I found one of his art exhibits on Facebook
"Iíve slept with enough men to know that Iím not gay"

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #111 on: May 21, 2014, 02:59:16 PM »
***UPDATE***

1) prescription not approved, neurologist's office dealing with insurance pre-approval bullshit; have to call them tomorrow

2) NovaCare physical therapist pool closed for two weeks -- can't do intake for aquatic therapy until 11 June

3) I still believe that Puerto Rican trick with diamonds on his front teeth back in 1997 put a strong santerŪa hex on me which is why everything is always a clusterfuck
"Iíve slept with enough men to know that Iím not gay"

Offline mitch777

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Re: o hai guys! Let's chat about AIDS!
« Reply #112 on: May 21, 2014, 03:10:16 PM »
***UPDATE***

1) prescription not approved, neurologist's office dealing with insurance pre-approval bullshit; have to call them tomorrow

2) NovaCare physical therapist pool closed for two weeks -- can't do intake for aquatic therapy until 11 June

3) I still believe that Puerto Rican trick with diamonds on his front teeth back in 1997 put a strong santerŪa hex on me which is why everything is always a clusterfuck

 #1 and #2 suck. maybe #3 as well. ???
31 years hiv+ (oct. 2013) with a curtsy.

Offline Theyer

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Re: o hai guys! Let's chat about AIDS!
« Reply #113 on: May 21, 2014, 03:27:49 PM »
Can you not have the hex removed by a priest in the religion and can you give more info about this character or is it something that must be private , if so , what disappoints and sorry for the intrusion.

All your symptoms fit with Sciatica.

What is your point for the introduction off pain killers , I ask because I resisted too, and was furious at my self when I finally accepted. And in my case the bit about all ways needing more is tosh , I use less than I did a year ago.

Anyway David, hope it all works well for you, enjoy the printing .
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #114 on: May 21, 2014, 03:54:32 PM »
Are you asking, in that convoluted butchery of the English language, why I am resisting using pain medication for my woes? I get the sense that doctors here wish to exhaust alternatives first, but I'm sure if I put my fist down at some point with my primary HIV doctor he will go that route. And he will monitor it himself instead of pawning me off to a pain specialist, or at least that's what my clinic has done for a friend of mine.

I also have another friend, HIV-negative, who lives in Toronto that has had debilitating chronic pain having to do with some spine issue and neuropathy from that and his doctor got him into some novel ketamine injection regimen. I may touch base with him on Facebook and see how that worked out. We are friends of over 15 years but I've sort of lost track of where he is now in terms of resolving this.

At the end of the day I will not be surprised if I end up a Jeff-esque pill junkie.
"Iíve slept with enough men to know that Iím not gay"

Offline Theyer

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Re: o hai guys! Let's chat about AIDS!
« Reply #115 on: May 21, 2014, 06:29:53 PM »
Are you asking, in that convoluted butchery of the English language, why I am resisting using pain medication for my woes? I get the sense that doctors here wish to exhaust alternatives first, but I'm sure if I put my fist down at some point with my primary HIV doctor he will go that route. And he will monitor it himself instead of pawning me off to a pain specialist, or at least that's what my clinic has done for a friend of mine.

I also have another friend, HIV-negative, who lives in Toronto that has had debilitating chronic pain having to do with some spine issue and neuropathy from that and his doctor got him into some novel ketamine injection regimen. I may touch base with him on Facebook and see how that worked out. We are friends of over 15 years but I've sort of lost track of where he is now in terms of resolving this.

At the end of the day I will not be surprised if I end up a Jeff-esque pill junkie.
Allways the critic a David? Its allways welcome after years off remedial writting to have on going critism . Apart from today as my skin is thin , and to make myself as clear as I can your Matt Crowley apprentaship reminded me off years off depression.
Os nought bout the diamonds in the teeth "trick" then.
« Last Edit: May 21, 2014, 06:40:24 PM by Theyer »
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline wolfter

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Re: o hai guys! Let's chat about AIDS!
« Reply #116 on: May 22, 2014, 06:31:58 AM »
A very simple test he had me do in terms of balance was to stand straight up, both feet tight together, eyes closed -- in that scenario I could not maintain my balance at all. Then he told me to open my eyes and magically I could perfectly balance myself.


I've tried this test several times and got the same result; I felt instantly drunk and stumbled every time.  What does that indicate?  This means I'd also fail a field sobriety test even if completely sober.  ;)
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #117 on: May 30, 2014, 07:30:13 AM »
***UPDATE***

1) prescription still not approved, doctor's appeal of same declined, doctor making second appeal

2) my MRI came back showing only minimal arthritic stuff so my sciatica issues are not spine related but due to years of lipoatrophy in my buttocks causing nerve compression -- unless someone wants to pay for permanent PMMA type fillers back there this will never be resolved. Hooray! Whatever the case my lower back always hurts.

3) my first attempt at having the necessary fasting blood work done at my HIV clinic failed because my neurologist neglected to inform me that some of it requires 1 and 2 hour glucose tolerance items that need to be done at a hospital, so I'll fast again next week and go have those done. My HIV doctor who I dropped in and saw yesterday unannounced thinks the neurologist is trying to rule out non-HIV causes for my neuropathy in case it's something degenerative, or something along those lines.

4) follow up appointment made with neurologist for 11 July

5) yet another podiatrist appointment this afternoon
"Iíve slept with enough men to know that Iím not gay"

Offline mitch777

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Re: o hai guys! Let's chat about AIDS!
« Reply #118 on: May 30, 2014, 01:50:42 PM »
Well, most of that pretty much sucks. Best of luck on the prescription appeal. 
31 years hiv+ (oct. 2013) with a curtsy.

Offline zach

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Re: o hai guys! Let's chat about AIDS!
« Reply #119 on: May 30, 2014, 02:06:30 PM »
damn man, i hate reading about your neuropathy issues... i'm hoping to get over this in short order. two months of it has me crying like a sissy, and you've been wading in this shit for a long minute

good luck on that special k, never knew it came in a cream

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #120 on: May 30, 2014, 03:50:34 PM »
The idea behind transdermal medication is new-ish, the thinking being that it's more direct than oral medications which do not target the specific area of concern. Plus it's obviously easier on your GI tract when someone, like me, is already taking a thousand pills a day. Plus Yankee doctors shun the opiate craze popular in our southern regions because we have a raging heroin epidemic up here. Gateway drug and all that.

Unfortunately insurers do not think like that.
« Last Edit: May 30, 2014, 03:57:34 PM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline Theyer

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Re: o hai guys! Let's chat about AIDS!
« Reply #121 on: May 31, 2014, 06:38:08 AM »
As mitch said.

Your point 2 I have argued that  if ones body changes so dramatically it would have knock on effects on nerves---only to get that irritating shrug and non committal erm which means no time to get involved in that discussion I wish patients would just shut up.

Keep on keeping on you dig up interesting stuff.

Enjoy the next meal
m
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #122 on: May 31, 2014, 07:17:14 AM »

Your point 2 I have argued that  if ones body changes so dramatically it would have knock on effects on nerves---only to get that irritating shrug and non committal erm which means no time to get involved in that discussion I wish patients would just shut up.


Fortunately my HIV doctor isn't like that at all, nor my podiatrist in terms of lipoatrophy's effect on nerve compression. My neurologist I had to explain to him what lipoatrophy was in terms of long-term HIV.
"Iíve slept with enough men to know that Iím not gay"

Offline BT65

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Re: o hai guys! Let's chat about AIDS!
« Reply #123 on: May 31, 2014, 07:30:18 AM »
David, I'm sorry to read about all these issues you're dealing with.  If it helps, I can sympathize on the balance issue.  If I don't walk with my cane, I lose balance and fall.

I hope the insurance approves this med soon, it sounds like it may really help.  I know you're tough and will keep fighting, but it does get tiring, doesn't it.  Hang in there, my friend.

Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Miss Philicia

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Re: o hai guys! Let's chat about AIDS!
« Reply #124 on: June 25, 2014, 11:28:20 AM »
So, here we are a month later and fuck ups continue left and right. Whichever woman at my neurologist office that was supposedly dealing with my topical cream insurance appeals suddenly disappeared so now "Samantha" is dealing with -- she could find no paperwork indicating any appeal was ever made, but she says the neurologist is confident it will eventually be approved. I highly doubt it myself... and they are slow as molasses in getting back to you. Low and behold she called me yesterday, neither to update me on the appeal or her negligence in returning my physical therapy treatment plan, but to cancel my July follow up appointment and re-schedule it for a further six weeks later. Or basically 3.5 months after my first appointment when in fact the doctor wanted to see me in six weeks. It is to laugh. As it is she claimed she was "squeezing me in" -- seriously?

Finally have sorted out my first aquatic therapy session for tomorrow at 2 PM, and I'm glad it's with a woman so I don't have to be embarrassed in the pool with a hot guy.

If I don't have this fancy pants cream in hand by the time I see my HIV doctor in four weeks I'm going to raise hell, pound the table, and demand some fucking opiates. I'm fucking tired of being spread out on my sofa watching bad J-Lo movies simply because I can't walk more than a handful of blocks or sit on well-padded desk chair over an hour. Some days are worse than others -- a couple days ago it was so bad I was screaming out loud.

On the plus side I finally scheduled an appointment with my new cool-rectal specialist. I no longer will have to trudge on two subways and one bus for a 1.5 hour journey both ways and can now get to the new guy's office in 10 minutes, and can have my colonoscopies done across the street at Hahnemann University Hospital. Nor did they balk at my insurance coverage and totally knew my HIV doctor by name -- not sure why I haven't been going to see this guy for the past five years already.

That is all.
"Iíve slept with enough men to know that Iím not gay"

Offline WillyWump

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Re: o hai guys! Let's chat about AIDS!
« Reply #125 on: June 29, 2014, 01:35:10 PM »
My God ghurl. Sorry about all the issues.

But hey Colonoscopies right across the street! What could be better!
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

 


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