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Author Topic: vampires  (Read 122010 times)

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Offline Loa111

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Re: vampires
« Reply #150 on: September 21, 2022, 06:09:22 pm »
Thanks Jim. I managed to hand the sample in embarrassment free  :) actually the staff were fun about it as I mentioned I felt a bit awkward handing it over.

Vampires visit went well today. Still UD. CD4 is down a bit 280 ish but I know that fluctuates as per often discussed on this forum. In fact the CD4 being a bit lower it does not bother me at all, as long as I'm UD, and all I can do anyway is take my daily pills.

Docs running a few extra test for my niggles, including the prostrate blood test which I am very happy to be getting. I've been peeing a lot recently, like a weak bladder, so they asked for a urine sample too to check for any infections. Might just be from me drinking more liquid than I remember, but good to get this checked.

I've had trouble sleeping recently, like waking up after an hours sleep & troubling getting back to sleep. I asked for sleeping pills, got a no for that request but they gave me a Melatonin script instead which is fair enough.

Also since it's been a year since the checked my cholesterol, they'll check that again & are putting me on the list for some sort of a 10 year heart check. Not sure what that is, but good to check anyway.

They at least 15 vials of blood today too, I think re all the extra tests, & also some extra of the research study they're doing currently.

Had a bit of a close call today too!!! >:( I'm very private & extremely confidential about my poz status. I was sitting awaiting my blood draw, when I looked up & saw a guy I know walking in to hand medical implements to the nurse! I know he works in the lab. I don't think he noticed me, & I ducked my face behind the curtain & he was literally 2 feet on opposite side of curtain. I was praying the nurses, who I all know, would not turn around & speak to me whilst he was there. It would have been rather awkward for me  & it would not take a genius to figure out what health condition I have sitting in the ID clinic on this particular day of the week, especially when one is staff there. Who knows, he might be checking my labs for all I know & seeing my name on the computer. He went after a minute or two. It's just I could really do without this chap (or anyone else for that matter) knowing my status, as I see him around a lot where I live, we know several people in common & we have a casual chat always.

All in all a good vampire visit. Happy to get a few extra tests done. Now let's see does this Melatonin help me sleep tonight?  ;)

Offline Jim Allen

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Re: vampires
« Reply #151 on: September 22, 2022, 07:10:47 am »
Thanks Jim. I managed to hand the sample in embarrassment free  :) actually the staff were fun about it as I mentioned I felt a bit awkward handing it over.

Vampires visit went well today. Still UD. CD4 is down a bit 280 ish but I know that fluctuates as per often discussed on this forum. In fact the CD4 being a bit lower it does not bother me at all, as long as I'm UD, and all I can do anyway is take my daily pills.

Docs running a few extra test for my niggles, including the prostrate blood test which I am very happy to be getting. I've been peeing a lot recently, like a weak bladder, so they asked for a urine sample too to check for any infections. Might just be from me drinking more liquid than I remember, but good to get this checked.

I've had trouble sleeping recently, like waking up after an hours sleep & troubling getting back to sleep. I asked for sleeping pills, got a no for that request but they gave me a Melatonin script instead which is fair enough.

Also since it's been a year since the checked my cholesterol, they'll check that again & are putting me on the list for some sort of a 10 year heart check. Not sure what that is, but good to check anyway.

They at least 15 vials of blood today too, I think re all the extra tests, & also some extra of the research study they're doing currently.

Had a bit of a close call today too!!! >:( I'm very private & extremely confidential about my poz status. I was sitting awaiting my blood draw, when I looked up & saw a guy I know walking in to hand medical implements to the nurse! I know he works in the lab. I don't think he noticed me, & I ducked my face behind the curtain & he was literally 2 feet on opposite side of curtain. I was praying the nurses, who I all know, would not turn around & speak to me whilst he was there. It would have been rather awkward for me  & it would not take a genius to figure out what health condition I have sitting in the ID clinic on this particular day of the week, especially when one is staff there. Who knows, he might be checking my labs for all I know & seeing my name on the computer. He went after a minute or two. It's just I could really do without this chap (or anyone else for that matter) knowing my status, as I see him around a lot where I live, we know several people in common & we have a casual chat always.

All in all a good vampire visit. Happy to get a few extra tests done. Now let's see does this Melatonin help me sleep tonight?  ;)

I have a few comments but it will have to wait until I am back at my laptop.

Hope the Melatonin helped you fall asleep last night.

Ended up missing my appointment this morning  :( Caelan's school bus was 25 mins late and after that, my morning fell apart.

The only good news was my free travel card was approved so I can travel on the bus/train for free soon.
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Offline Loa111

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Re: vampires
« Reply #152 on: September 22, 2022, 11:14:57 am »
Hope the Melatonin helped you fall asleep last night.

Ended up missing my appointment this morning  :( Caelan's school bus was 25 mins late and after that, my morning fell apart.

The only good news was my free travel card was approved so I can travel on the bus/train for free soon.

Sorry to hear you'd a messy morning Jim & missed your appointment, that's a headache for sure, as we all know the ID clinic takes up a lot of the day just going there & waiting etc.

I think the Melatonin helped a bit last night, not perfect, but better than nothing. The Pharmacist told me it can take several days of consistently taking it for the full effect to work, so fingers crossed.

We'll at least you can go travelling now with your free bus pass!  ;)

Offline Jim Allen

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Re: vampires
« Reply #153 on: October 04, 2022, 01:05:05 pm »
Sorry to hear you'd a messy morning Jim & missed your appointment, that's a headache for sure, as we all know the ID clinic takes up a lot of the day just going there & waiting etc.

I think the Melatonin helped a bit last night, not perfect, but better than nothing. The Pharmacist told me it can take several days of consistently taking it for the full effect to work, so fingers crossed.

We'll at least you can go travelling now with your free bus pass!  ;)

Glad to hear the Melatonin helped a bit. How are you getting on now its been a few nights?

Quote
We'll at least you can go travelling now with your free bus pass!  ;)

Yup. Tested the card last week. I travelled free by train to Dublin and a 70 bus back. Checked, and its valid on trains throughout Ireland, so prehaps ill do a journey to Cork or Galway later this year for free

Quote
Sorry to hear you'd a messy morning Jim & missed your appointment, that's a headache for sure, as we all know the ID clinic takes up a lot of the day just going there & waiting etc.

Yeah, the new appointment is on the 20th of Oct.

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Offline Loa111

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Re: vampires
« Reply #154 on: October 05, 2022, 05:04:58 am »
Glad to hear the Melatonin helped a bit. How are you getting on now its been a few nights?

Melatonin I suppose helps a bit, but nothing major, I still wake up a lot to pee. I'm actually stopping drinking tea in the evening & cutting out my decades habit of a glass or two of 7up near bedtime, so see if that can minimize the several pee's during the night.  Doc did take blood for a prostrate test on my recent clinic visit just to be sure.

Enjoy your travel card. Galway is a great place to visit & love walking out by the sea to Salthill. It's worth going for a day just to do that.

Good luck with your next appointment & let us know how it goes for you.


Offline Jim Allen

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Re: vampires
« Reply #155 on: October 20, 2022, 05:45:47 am »
Hmmm.

At the clinic today. So CD4 890 @38% and VL below 50

Happy days although will have some comments on the clinic visit later.
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Offline Jim Allen

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Re: vampires
« Reply #156 on: October 20, 2022, 06:47:30 pm »
Hmmm.

At the clinic today. So CD4 890 @38% and VL below 50

Happy days although will have some comments on the clinic visit later.

The clinic visit was fine, a very nice but new doc, one week into their three-month rotation.

All labs are fine. However, a repeat MRI had been booked regarding my neuropathy as they want to double-check they didn't miss anything... It makes no sense to me if I am honest, and they want to do vascular studies in six months.
« Last Edit: October 21, 2022, 01:12:25 am by Jim Allen »
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Offline Loa111

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Re: vampires
« Reply #157 on: October 24, 2022, 07:28:38 am »
All labs are fine. However, a repeat MRI had been booked regarding my neuropathy as they want to double-check they didn't miss anything

Glad to hear your clinic visit went well. I remember you saying you had to reschedule it from a few weeks ago. That's a great CD4 level Jim, obviously it strengthened over your years on treatment. Curious as to what was your lowest CD4 level ever?

That's nice the medical team is being thorough & sending you for a repeat MRI, it's good to have things double-checked even though it means taking a day to go in & do it.

Is there a long wait over at James ID clinic for your usual appointment?

I notice too where I go, there's always new doctors doing the appointment, & then if I've a question on anything, the boss sticks his head in to say hello and give me an answer (which I'm most grateful for). I'm guessing this rotation of doctors are training up to be ID consultants?

 


Offline Jim Allen

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Re: vampires
« Reply #158 on: October 24, 2022, 08:35:59 am »
Quote
I notice too where I go, there's always new doctors doing the appointment, & then if I've a question on anything, the boss sticks his head in to say hello and give me an answer (which I'm most grateful for). I'm guessing this rotation of doctors are training up to be ID consultants?

There seem to be two groups, ones that have a three-month rotation, prehaps they are more junior doctors only getting an "Intro" on the different departments and then there is a group doing a year's rotation on the ID clinic.

Quote
Is there a long wait over at James ID clinic for your usual appointment?

I'm at the Mater Hospital, and waiting times are not too bad. I think I was waiting 20 mins or so.

Quote
That's a great CD4 level Jim, obviously it strengthened over your years on treatment. Curious as to what was your lowest CD4 level ever?

You can have them. I might have plenty of CD4s floating about, but they are truly lazy little fuckers  ;D

My lowest two counts were within a week of each other,  I believe it was 72 (or74) and 28...However, I would have to check my notes to be 100% sure. 





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Offline Jim Allen

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Re: vampires
« Reply #159 on: October 24, 2022, 08:39:49 am »
@Loa111

How is insomnia going? Any further improvements?
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Offline Loa111

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Re: vampires
« Reply #160 on: October 24, 2022, 12:34:08 pm »
How is insomnia going? Any further improvements?

The Melatonin seems to be helping a bit, it certainly makes sleepy. I'm working on cutting down night time liquid consumption to minimise getting up for pee's in the middle of the night. Think I'd just one pee last night about 230am. Bad habit of drinking 7up or Coke Zero in late evenings/night & peeing does not help insomina.

Lol..yes please send me a few CD4s, I'm still stuck around 300 ish! Developing a case of CD4 envy!  :D


Offline Jim Allen

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Re: vampires
« Reply #161 on: October 24, 2022, 12:52:44 pm »
The Melatonin seems to be helping a bit, it certainly makes sleepy. I'm working on cutting down night time liquid consumption to minimise getting up for pee's in the middle of the night. Think I'd just one pee last night about 230am. Bad habit of drinking 7up or Coke Zero in late evenings/night & peeing does not help insomina.

Glad to hear it's helping somewhat.

Cutting down on the coke zero late evenings might help as it still contains caffeine; I know you can get the 2L bottles of zero Sugar Caffeine Free Coke at Tesco and Supervalu.  Tesco has them on offer, two bottles for 4 euros.



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Offline leatherman

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Re: vampires
« Reply #162 on: October 25, 2022, 06:44:32 am »
Quote
Coke
just like Beetlejuice, "Coke" has been uttered 3 times, so here I am.  ;D


My sleep has always been f-ed up since just before I turned 30. Thirty years later, I've just come to accept and expect that somehow <=6 hrs. a night (and never multiple nights in a row) is somehow fine. It hasn't killed me yet. ;) If I really want to sleep though I've been known to take half a Benadryl because it zonks me out.  ;D

Larry and I go to the doctor on the 3rd for bloodwork and updating the doc on both of us having covid and me having whatever the hell that was I had a week ago.

leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline leatherman

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Re: vampires
« Reply #163 on: November 03, 2022, 06:39:18 am »
ouch!
A week ago the clinic called and asked us to change our appointment since our doctor would be out of the office. We really love and respect this doctor but this date-change thing happens a lot as he often travels as a speaker. Then the office called again the day before yesterday to say the doc still wouldn't be in but we could see one of the other clinic physicians if we wanted. Well, I didn't want to wait any longer for a flu and a covid booster so we went yesterday.

Although it wasn't just that easy. Our clinic has 4 locations and is currently remodeling the one we normally go to, so we had a different trip up to CLT. it was still an hour drive to get there, so this location wasn't any closer.

Since our last appointment, we both had covid - and so had this doctor. LOL Even though I'm still not certain of the cause, this doctor suggested that my "mystery illness" of a few weeks ago was mostly likely a viral GI infection or food toxin. He took the view of food toxin more though as he claimed to have had a similar situation himself a few years ago. Whatever caused it, as long as it doesn't happen again, I'll be happy.

So we had blood drawn and maybe today we'll start to get lab work back. In the meantime, my arm HURTS! Not the flu shot (those never bother me) but that damned covid booster. The first shot never bothered me; but each subsequent booster has left my arm hurting more and more the day afterwards and a little more.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Loa111

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Re: vampires
« Reply #164 on: November 04, 2022, 07:30:44 am »
ouch!
Not the flu shot (those never bother me) but that damned covid booster. The first shot never bothered me; but each subsequent booster has left my arm hurting more and more the day afterwards and a little more.

Hope you feel better soon Mikie! Your timing is the same as mine, as I'd my Covid Booster yesterday too, which is my 4th shot. My arms feels a bit tender too & I feel like I've a slight cold today too, guessing it's a side effect. So perhaps some paracetamol for both of us & a good excuse to take it easy for a day or so.
I'm in for my flu shot on Tuesday, that usually leaves me a bit under the weather too, so let's see! :)

Offline leatherman

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Re: vampires
« Reply #165 on: November 04, 2022, 09:47:00 am »
you know what else I forgot to bitch about? The wait. We sat in the waiting room longer than ever. We sat in the exam room longer than ever. (We, Larry and I, "share" two appointments and see the doctor together. No hiding any health issues when your spouse is in the same room as you. LOL) After a total wait of and hour and 15 mins, we had been discussing just leaving and were starting to stand right as the doctor knocked and entered the room.  ::) But we did get all our shots and labs done, even though we had to fight back through 5 o'clock traffic in the "big city". (LOL After Cleveland and Charlotte, I must say living in a city >10k is a lot quieter and the traffic is a LOT easier and that's why we don't live in CLT now.)

Don't get me wrong. Even though this wasn't our regular doctor (who actually isn't an MD but an HIV Specialist), this was one of the clinic's MD's and he's a good guy and good doctor. It's just that we really don't have many health issues, so we rarely see the Physicians in the clinic but just our guy (whose acronyms are MHS, PA-C, AAHIVS, DFAAPA instead of MD. LOL)

ok, now covid shots. This was our 4th booster. Just like the previous 2 shots, we didn't have any side-effects - until the sore arms the next day. I took 8 extra strength tylenol throughout the day and that really helped. Unfortunately about 24 hrs after the booster, I felt "weird". Sort of like I did before I get hit by all the vertigo and barfing a few weeks ago. But I took it easy and feel fine now.

It's sooo hard for me to "take it easy" most days  8) :D but now with the new pupper  :-* (3 mos. old now.) and sooooo many acorns and leaves I need to get raked up out back  :o , it just killed me to sit around all day yesterday. So I'm better today, no lab results in yet, and about to go hit the gym (and the tanning booth!) before tackling all that yard work.

Don't rush it if you're not feeling well yet (that's partially why I was sick a couple seats ago. Not realizing my own limitations) but hopefully you'll perk up soon!!
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline LeftyBowler300

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Re: vampires
« Reply #166 on: December 20, 2022, 11:05:32 pm »
Vampires yesterday (19th).
CD4 379 17.9%
VL < 20
CBC/Metabolic looked good
The only “meh” was an LDL of 116. I guess Ben & Jerry has to go  :'(
Apr 1, 2017 DX - CD4 8 , VL 820,000
OI's: Disseminated Histoplasmosis, Thrush, PCP
Apr 17, 2017 started Genvoya, Bactrim, Sporanox, Azitrhomycin
Jun 9, 2017 - CD4 42 (3%) , VL 100
Jul 17, 2017 - CD4 57 (4%) , VL 53
Sep 16, 2017 - CD4 57 (4%) , VL 130 - Ugh..
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Nov 5, 2018 - CD4 104 (7%), UD
Jan 26, 2019 diagnosed with HIV-associated DLBCL (lympoma) with 6cm mass near liver w/ abdominal fatty tissue involvement
6 rounds of RR-EPOCH
2 rounds of high dose methotrexate
(8 rounds of IV chemo total)
11 Lumbar punctures with intrathecal chemo
June 5, 2019 - Complete Response/Remission
Feb 20, 2020 - CD4 187, VL UD
Aug 2020 - CD4 247, VL UD
Stopped all prophylaxis
June 2021 - 2 years remission

Offline Jim Allen

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Re: vampires
« Reply #167 on: December 21, 2022, 05:29:02 am »
Vampires yesterday (19th).
CD4 379 17.9%
VL < 20
CBC/Metabolic looked good
The only “meh” was an LDL of 116. I guess Ben & Jerry has to go  :'(

 8)
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Offline Loa111

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Re: vampires
« Reply #168 on: January 18, 2023, 11:46:18 am »
Had my latest Vampires appointment today. It's every 4 months these days.

I live less than 20 minutes from the clinic so I always make a bit of an occasion out of a visit so had a lovely breakfast of sausages, bacon, eggs etc & cappuccino in a cafe near by before heading in for my 11.45 am appointment. For some reason the waiting room was not so busy today, so I hardly had to wait 15 minutes before ID doctor called me in.

All good thankfully, VL is undetectable. CD4 around 360 where it seems to hover these days. Cholesterol is ok.

More good news in that they ran a prostrate blood test on me and the result came back as 1 which is well within the normal range.

These days I do not even hone on the the exact figures for my usual blood tests, once I hear UD, I am happy and understand that all I can do anyway is take my pills daily, & aim to stay healthy as I can. 

Gave my bloods, a new blood tech who forgot to get one of the samples off me so I had to be jabbed twice. Had a bit of fun banter & chit chat with the usual nurses who are there years.

Got my meds from clinic pharmacy, off home. It was quite an uneventful routine clinic visit which is a very good thing!  :)

Back in mid-May for my next appointment.

Offline leatherman

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Re: vampires
« Reply #169 on: January 18, 2023, 12:47:28 pm »
Sorry you had to get stabbed twice; but your numbers are good, you feel good, and the next appointment isn't for months. ;)


from the clinic so I always make a bit of an occasion out of a visit
back in 93, when the AIDS was killing me and the meds sucked, I started the practice of treating myself after every doctor/lab visit. Back in those days, my treat was always a bag of candy (I LOVE candy and go through phases of what I like the best at any given time) and a computer magazine. OMG! I just realized that I'm talking about a time when people barely even knew there was an internet. (All Hail AOL and their floppy discs!).

These days, I'm old enough and aren't so poor that I buy candy when I want it (all the time) and I haven't touched a computer magazine in years. (do they even still print magazines?) My big treat to myself now is simply to not have to cook dinner that night, since it's about 45 miles to our doctors office and we have to drive home during afternoon rush hour traffic in CLT. So we either go out for Mexican and Margaritas or we go by a drive-in restaurant in my old neighborhood for their delicious fried fish and the BEST tartar sauce in the world.

In the early days, the treat after the doctor visit was the incentive to even care about my treatment and health (those was bad, bad days). These days, the treat is a great reminder that I'm alive and life is good!
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Loa111

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Re: vampires
« Reply #170 on: January 18, 2023, 03:17:50 pm »

I started the practice of treating myself after every doctor/lab visit. 

and a computer magazine.

 I haven't touched a computer magazine in years. (do they even still print magazines?) These days, the treat is a great reminder that I'm alive and life is good!

Yes I think it's a very good idea to build in a treat around our ID Clinic visits. Let's face it, generally it's a fairly boring task, go there, sit for a long time, wait, maybe an hour or more if bust, see doc, wait more for bloods & pharma, & of course get stabbed. So why not make it a more "fun" event?  With my treat usually a big breakfast before or a lunch after depending on the appointment time, & a couple of coffees, it actually causes me to look forward to the clinic visit.  :)

Oh yes I remember those computer magazines. I used to get them as a teenager. There'd also be a program you could type into your computer in BASIC (the old programming language) for a game or something, so I'd spend hours typing it in & it would never ever work due to a bug! lol.

I used to love buying magazines on my favourite hobbies etc and the good news is there's still plenty available however I find magazines these days kind of water down versions with lite articles and with mostly ads in them, compared to magazines back in their hey day.

Offline Jim Allen

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Re: vampires
« Reply #171 on: April 27, 2023, 08:10:48 am »
I have to visit the vampires next week Thursday.

It was supposed to be the first week of April, but I called in sick, As I had plenty of meds left and couldn't be arsed.
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Offline leatherman

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Re: vampires
« Reply #172 on: April 27, 2023, 09:59:55 am »
we're going in two weeks. I was waiting on my meds to get delivered when the pharmacy called about needing to get refill prescriptions but my doctor's office was refusing to refill. So I called the doctor's and they were complaining that I needed to make my next appointment otherwise they wouldn't consider me still a patient and wouldn't issue any refills.

Ah! So their computer problems that wouldn't let them make an appt. when we were last in the office, and then their personnel issues with no one calling to make our next appt. are all my fault and now I have another little black mark against me for being a non-compliant patient. (I already have little black non-compliant marks from previous doctors when I gave up AZT after 9 months in 1993 and quit taking Sustiva back in 1999 after 9 months). That's me LOL a bad-ass non-complaint patient ROFLMAO

All this happened after having a discussion with our doctor about 5 months ago about how he was not planning to retiring for a long while yet. When you're long term survivors with a great doctor who has 30+ HIV experience and you're all getting to be 60ish (I'm 62, the doc is 63) you worry about these things. Then less than 3 months later he up and quit his practice to go play doctors without borders (for a month before returning to enjoy retirement back in the states) leaving us with the HIV PA he had been training. We're cool with the newer PA (he's younger but well-trained and knowledgeable. my volunteer work included working with him at the clinic with peer support and Ryan White stuff a few years ago when he was new to the practice.) but that left us with all sorts of paperwork to cover "switching" to a newer physician. ugh.

anywho, meds got delivered yesterday, an appt is set up for the 10th, and I'll put on a smiling face for the new PA and his vampire friends. :)
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Jim Allen

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Re: vampires
« Reply #173 on: April 27, 2023, 10:52:06 am »
Quote
now I have another little black mark against me for being a non-compliant patient.

Congratulations you made the shitlist

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Offline leatherman

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Re: vampires
« Reply #174 on: April 27, 2023, 11:02:17 am »
Congratulations you made the shitlist
hell yeah!  ;D
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Jim Allen

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Re: vampires
« Reply #175 on: April 27, 2023, 11:02:46 am »
]We're cool with the newer PA (he's younger but well-trained and knowledgeable. my volunteer work included working with him at the clinic with peer support and Ryan White stuff a few years ago when he was new to the practice.) but that left us with all sorts of paperwork to cover "switching" to a newer physician. ugh.

anywho, meds got delivered yesterday, an appt is set up for the 10th, and I'll put on a smiling face for the new PA and his vampire friends. :)

Well, at least you already know him so that's something, you are not being left with strangers taking over your HIV care. Hopefully, all goes well on the 10th.
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Offline leatherman

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Re: vampires
« Reply #176 on: April 27, 2023, 11:47:48 am »
well, I've had two crappy HiV doctors (even if they did help keep me alive) and two GREAT AWESOME WONDERFUL doctors. I really expect this new one to end up in the Great category. Thankfully these days, I've got so few issues it should be easy for him to be a good doctor for me.
leatherman (aka Michael)

We were standing all alone
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Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline BubbaPat

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Re: vampires
« Reply #177 on: April 27, 2023, 12:38:18 pm »
I hear and feel ya LeatherMan.

My first doctor I went to gave me my diagnosis but we had just found out about having to move literally days before following up with our blood work.  I found out I was positive and moving across the county.  Luckily he KNEW A GUY. 
When we got to SF, the doctor there was AMAZING!!!  LOVE HIM.  Problem was he worked out of the university in town and SF General.  At SFG, I was a nuisance to the staff because apparently they thought working in the clinic meant they got paid to sit around and do NOTHING.  Now at University, Karen the receptionist was beyond AWESOME.
Then he retired for research.  Karen had to tell me after I showed up for my now retired doctor.  She gave me an okay one.  She warned me he was straight, dry but nice.
Then we moved BACK to Texas.  Got a referral for a friend for a GREAT doctor he loved!!  I always got the PA, never the doctor.  The PA was nice.  I found out they had sold the practice on my visit.  One of their LAST patients.  I finally met my doctor.  He acted like we were best buds and he was sorry but he was making the decision to go into research, which he did of a 3 months then back to practice he went but now on the far side of DFW, from me anyway.
So.. my replacement... a HARD CORE Republican who was gay and married.  4 kids, three boys and a girl.  I got to hear LOTS about them every visit I had.  Along with his MESSY divorce and what a "not nice person" the ex was.  When I asked about being depressed or ADD, he blew it off and continued with his family stories.
I stopped going and when my meds ran out, I didn't care.  My last doctor had made me feel such a waste of oxygen, I didn't want to go back.. EVER.
I finally pulled my head out of my rear and found a new Doc.  So far he has been fantastic!!  Got me on anti depressants and ADD meds an the world seems a little better place.
Finding that right doctor these days is tough.

Bubba hugs kiddo!!
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Offline leatherman

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Re: vampires
« Reply #178 on: April 27, 2023, 02:17:35 pm »
My first doctor in OH in 1992 (old straight white dude doing the esoteric "infectious diseases", which used to be just a lot of malaria vaccines before the rich jetsetted to some 3rd world county) got really freaked out by all the gays in his waiting rooms and all these patients dying. He fell into alcoholism and lost a lot of hospital privileges.

The 2nd doctor also in OH in 1999 was the best! He kept me from dying the second time AIDS almost got me, and then helped me through a couple combos before finding the meds and put me on the path I'm on today. (Every time I go back to OH to visit I stop in to say hey and thank him again for keeping me alive)

The third doctor I had was in SC (unfortunately NOT in Charlotte, NC; but a little 'burb across the state line in SC), was just blah. While plenty of people vouched for his experience in the previous decade, by the time I started seeing him, he was just phoning it in. I get that the HIV clinic was changing to a FQHC (federally qualified health center) but, damn man, the last visit I had with him he was only in the exam room 1 min and 20 secs. I know this because I had been timing the last 6 visits that had been under 5 mins. each.

So on to the the 4th doctor. (Especially after #3 wouldn't help with my husband's BP issue because he was just the HIV doctor.....well until the clinic became the FQHC and now he prescribes for all issues.) It's an hour drive up into CLT for this great HIV Specialist PA and worth every bit of the travel. I had worked with him a few years in the CLT TGA Ryan White program, so knew IMHO that he was the best HIV doc in the area. Gay, my age, been treating for almost all long as I have had HIV, open and approving of every lifestyle and kink, a traveling HIV speaker, and really smart.

Now it's onto #5 with high hopes. At least I don't need anyone trying to keep me alive in a hospital anymore so I should be ok.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Jim Allen

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Re: vampires
« Reply #179 on: May 04, 2023, 06:55:58 am »
Viral load - Fully suppressed.
Lipid profile - All within normal range
CD4  - 728
All other labs - Normal range

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Offline Jim Allen

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Re: vampires
« Reply #180 on: May 04, 2023, 07:06:03 am »
Viral load - Fully suppressed.
Lipid profile - All within normal range
CD4  - 728
All other labs - Normal range

Six months prescription and an MRI of my spin scheduled for 2024

The only comment was the 5 kg weight gain since last time and to eat less, better and move more. In short, they said I am fat, and that's okay I just wish they would say it straight out.
« Last Edit: May 04, 2023, 11:54:50 am by Jim Allen »
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Offline leatherman

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Re: vampires
« Reply #181 on: May 04, 2023, 07:24:41 pm »
In short, they said I am fat, and that's okay I just wish they would say it straight out.
;D ;D ;D ;D
great on the numbers!
hanging in there with everything else??

A week and a half till I have numbers. I won't give my blood till next wed.  ;)

You know, right there is something that's gotten much better (at least here in the States) over the years. Used to, they took your blood and 2 or 3 weeks later you called your doctor to get the results. When you went into their office next, you may have even gotten a printout. Nothing fancy, just green and white continuous-feed paper printed in some tiny, smudge-able dot-matrix font. The doctor themselves probably wouldn't even address your results until at your next appointment in 2-3months.

Nowadays, by the next day after the blood draw, results start pouring in to the online portal...with doctor's notes even! The difference in technology and medicial practice in 3 decades has been amazing.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Jim Allen

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Re: vampires
« Reply #182 on: May 05, 2023, 02:14:47 am »

hanging in there with everything else??

Yeah. Rough week but okay 👍
« Last Edit: May 05, 2023, 02:28:50 am by Jim Allen »
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Offline Jim Allen

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Re: vampires
« Reply #183 on: May 05, 2023, 02:16:11 am »


A week and a half till I have numbers. I won't give my blood till next wed.  ;)

You know, right there is something that's gotten much better (at least here in the States) over the years. Used to, they took your blood and 2 or 3 weeks later you called your doctor to get the results. When you went into their office next, you may have even gotten a printout. Nothing fancy, just green and white continuous-feed paper printed in some tiny, smudge-able dot-matrix font. The doctor themselves probably wouldn't even address your results until at your next appointment in 2-3months.

Nowadays, by the next day after the blood draw, results start pouring in to the online portal...with doctor's notes even! The difference in technology and medicial practice in 3 decades has been amazing.

Sounds efficient.
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Offline leatherman

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Re: vampires
« Reply #184 on: May 05, 2023, 09:26:09 am »
Sounds efficient.
and that's electronic medical records, a part of Affordable Care Act, under President Obama, that I helped advocate for. :)

also, in my area, is an improvement with LabCorp, based out of NC. They improved collection of samples to get blood into the testing queue as soon as possible. while I still find that that the cd4 and vl counts take longer to arrive (1-3 days), regular CBC results start arriving into the system as soon as later that day or the next morning.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Loa111

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Re: vampires
« Reply #185 on: May 18, 2023, 06:24:47 pm »
My 4 monthly Vampires visit yesterday. Interestingly I just remember, this visit marked 5 years of visiting the ID clinic since my aids DX (approx end of May 2018).

All good. Undetectable as usual. CD4 377. ID Doc tells me 377 is ok, though said it would be better if it got up to 500 ish.  "Nothing we can do about that Doc, except I keep taking my pills, exercise & stay healthy", I said.

Cholesterol a little to the higher side. Nothing to worry about yet Doc said.. Apparently they take the average of two different types of cholesterol reading. When it hits a 7 then it might be time to do Statins. Think mine was about 5.6 if I remember correctly. Interesting, she didn't say anything about diet or ask me what I am eating or if I exercise re the cholesterol levels creeping up. Doc also did a Heart Score Percentage on the probability of getting heart disease later in life, think I was just over 2% or close to 2.5%.

I was peeing a bit a night so recently they ran a prostrate blood test, which is fine. Doc told me as men age, our peeing patterns can change due to the pipe shrinking as we age. She said that it has been noted on my file to potentially send me for a check up with a urologist at some point in the future, but no need to worry about if for now.

We spoke briefly about my several nights a week nagging Restless Leg Syndrome, which gets my left leg only. We agreed it is better for me to tough it out as best I can, instead of considering medication for it, at least for now, & if it gets worse, we can revisit the meds idea.

Nothing much else to report, all was good. Then after the Doc , I went into the nurse to get the blood draw, a pee test (not sure for what, but I give them a good sample anyway as I'd an extra coffee or two ;D lol).

Actually the pee might have been for a STI screening which I think they offer as part of the HIV consultation as I see the poz gay guys at the ID clinic been given swab or a  big Q Tip thing for their bottoms & heading off to the bathroom with it, which they then hand back to the nurse.

Then I'd chat with the ID Pharmacist whilst getting my meds. She always asks & checks if I am taking any other meds, of vitamins or supplements etc.

Always nice to see the ID Docs, generally it's the same team of docs, and always the same team of nurses attached to ID clinic. It always a pleasant experience for me to go there these days. All lovely, nice people, who do their best to be cheerful & welcoming. It really does make a difference going there, with such as cheerful crew. I enjoy my clinic visits, always time for a bit of chit-chat with the staff.  :)

I really love how they take a good holistic view point of the full health of HIV patients at my clinic. I feel very comfortable to share any other health problems there, & indeed the encourage this too, especially as us Poz people age & get older, the docs want to keep an eye out for early signs of any other health conditions which might emerge, so they can investigate & treat them in time. I am most grateful for that.

It was interesting too, as I saw a couple of younger women there too getting their blood draws & Hiv pills. This caught my attention, probably because I am straight & have a roving eye for the women  8) & I was wondering recently were there many women with our health condition around (I know of course that there are, however so far I have rarely come across any).

As I said before, I like to make a bit of an occasion out of my visit to the ID Clinic. Luckily I only like a 20 minute drive away, if that even. However, being an early bird, I generally go for a coffee before the visit, then after I pull in for a nice bit of lunch somewhere on the way home. 

Offline Grasshopper

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Re: vampires
« Reply #186 on: May 18, 2023, 09:51:34 pm »
about the "Pee test"   :

Two simple tests can help determine your kidney function:
Urine test called ACR (Albumin to Creatinine Ratio): ACR stands for “albumin-to-creatinine ratio.” It tests your urine for albumin, a type of protein. ...
Blood test to estimate your GFR (glomerular filtration rate).

Offline Loa111

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Re: vampires
« Reply #187 on: May 21, 2023, 09:22:46 am »
about the "Pee test"   :

Two simple tests can help determine your kidney function:
Urine test called ACR (Albumin to Creatinine Ratio): ACR stands for “albumin-to-creatinine ratio.” It tests your urine for albumin, a type of protein. ...
Blood test to estimate your GFR (glomerular filtration rate).

Fantastic info Grasshopper, thank you. This makes sense too, I actually take Creatine as a gym supplement, which the docs do not particularly like. I stop it at least 1 week before ID appointments as they say it may gave inflated kidney readings.

Offline Jim Allen

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Re: vampires
« Reply #188 on: June 07, 2023, 04:26:02 pm »
Six months prescription and an MRI of my spin scheduled for 2024

The only comment was the 5 kg weight gain since last time and to eat less, better and move more. In short, they said I am fat, and that's okay I just wish they would say it straight out.

Viral load - Fully suppressed.
Lipid profile - All within normal range
CD4  - 728
All other labs - Normal range



So had a cardiologist appointment today, it's part of a follow up to my visit with the vampires.

Stickers and leads everywhere, but everything is perfectly fine, except the nurse said I should loose weight... 😐

I told her it's called "fat" but she said they don't say that to patients  ;D
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Offline leatherman

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Re: vampires
« Reply #189 on: June 07, 2023, 06:35:35 pm »
Stickers and leads everywhere
omg. i hate that sooo much. I have a fairly hairy chest. (it just doesn't look hairy over my pecs because that's all turned white. It's like my hair color is bleeding out of me from my head down as I age. LOL) Nurses and techs have frequently apologized as they put on the leads on me for how it's going to feel ripping them (and my hair) off later.

Glad your test was good. :)
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Bucklandbury

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Re: vampires
« Reply #190 on: August 26, 2023, 07:18:18 pm »
Slowly creeping up T-cell wise. I might die with more than 500 yet.


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Re: vampires
« Reply #191 on: August 27, 2023, 09:44:05 am »
Nurses and techs have frequently apologized as they put on the leads on me for how it's going to feel ripping them (and my hair) off later.
OMG! It's like I'm prescient or something. ;D A month after my last post at my more recent visit to the doc, I found out the appointment was also my yearly physical - with EKG sticky pads included for fun.  ;D :o ;D It's so much easier when I only have to take out my nipple rings for MRIs or Xrays. LOL
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Jim Allen

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Re: vampires
« Reply #192 on: October 12, 2023, 07:04:18 am »
Vampire appointment next week on Thursday the 19th.  Can't believe it's that time again.
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Offline leatherman

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Re: vampires
« Reply #193 on: October 12, 2023, 12:18:26 pm »
I like this thread

Our appointment runs 2-4 weeks after yours, so this thread is always like a little heads-up that another visit to the doctor is on our horizon.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Jim Allen

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Re: vampires
« Reply #194 on: October 19, 2023, 06:19:11 am »
All lab's perfectly fine and CD4 631 (42%). Next appointment is the 4th of April


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Offline Jim Allen

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Re: vampires
« Reply #195 on: October 19, 2023, 07:46:11 am »
I just checked my last few CD4 counts; I must have sneezed and lost a few  ;D

CD4 42%, I am surprised. I wasn't expecting to see that, but it was great. It's totally meaningless, of course, but I did not really ever expect to see anything stable around that %, but it seems to have reached it.

All the other labs, including cholesterol, are as always perfect, perfect, perfect. I can't prove anything, but I put it down to my healthy lifestyle of little sleep, not drinking water and lots of swearing at people and avoiding vegetables & fruit ;)  ;D

Meeting with the doctor took 3 minutes too long this time, hitting the 6 min mark, 6 minutes is excessive in my mind, and that's time I will not get back in life  :( Doc talked about switching, and Dovato was mentioned once more and again, I said why and based on what evidence, so that ended that conversation.

The only noteworthy comment was when I mentioned some slight hearing loss on my right side but not to worry as I am getting a hearing test to confirm, they insisted I come back early if the test confirmed the hearing loss to visit ENT... I said yes but it's not going to happen, no other symptoms or issues just normal hearing loss.
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Offline Jim Allen

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Re: vampires
« Reply #196 on: October 19, 2023, 07:50:08 am »
Oh, I forgot to mention that she mentioned "prostate exam." I said sure if she can fit that into the 3 min meeting, otherwise it will have to be a GP visit at some stage.
« Last Edit: October 19, 2023, 08:17:27 am by Jim Allen »
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Offline numbersguy82

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Re: vampires
« Reply #197 on: October 19, 2023, 04:01:22 pm »
Oh, I forgot to mention that she mentioned "prostate exam." I said sure if she can fit that into the 3 min meeting, otherwise it will have to be a GP visit at some stage.

I’ve had a few of them last way less than 3 mins 🤣

But in seriousness, our cycles have synced up. I met with my ID doc yesterday and she did lab work so I should have results later today. She insisted on testing me for STDs including the oral throat swap for gonorrhea. I was like “still haven’t had any sexual contact per usual” but I don’t think she believes me. For some reason she must think homosexuals are promiscuous 😅

Glad your numbers are good and that you resisted making any medicine changes!

Offline Jim Allen

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Re: vampires
« Reply #198 on: October 19, 2023, 04:15:05 pm »
I’ve had a few of them last way less than 3 mins 🤣

It doesn't take long but it's just not something they can fit in the limited time I grant them as it is. Although if they stopped asking stupid questions it might fit.


Quote
She insisted on testing me for STDs including the oral throat swap for gonorrhea. I was like “still haven’t had any sexual contact per usual”



I would be running STI testing as well...I have the same thoughts whenever some in the "do I have HIV" section claims to only have had a massage and nothing else or that they are virgins or monogamous ;D
« Last Edit: October 19, 2023, 04:18:00 pm by Jim Allen »
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Offline leatherman

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Re: vampires
« Reply #199 on: October 19, 2023, 04:41:26 pm »
She insisted on testing me for STDs including the oral throat swap for gonorrhea.
it's a Ryan White requirement.

Providers who deal with HIV patients eventually have to deal with Ryan White aid for those patients. That aid comes with requirements of course. In fulfilling those requirements, providers often end up just counting and treating every patient (insurance, medi-care -caid, RW, etc) under those requirements.

Really it's one of the amazing things about the Ryan White Care Act: all HIV patients regardless of payee-status receive the same rigorous treatment and care. For a country without universal health care it's an unique law with an amazing outcome. The foresight of the people in the 80s who designed the program is astounding.

“still haven’t had any sexual contact per usual”
hmmm. ;D ;D my "per usual" is usually:

"same addy, same daily meds"  :D
"yes, I'm still doing my husband"  8)
"no, after a decade, we're not using condoms"  8) 8)
"gimme the cup so I can go pee"  ::)
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

 


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