Quantcast

Subscribe to:
POZ magazine
Newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr Instagram
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
March 29, 2015, 06:43:27 PM

Login with username, password and session length


Members
Stats
  • Total Posts: 659771
  • Total Topics: 50593
  • Online Today: 246
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online
Users: 3
Guests: 165
Total: 168

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: An on-going thread  (Read 44037 times)

0 Members and 1 Guest are viewing this topic.

Offline wolfter

  • Member
  • Posts: 4,950
Re: An on-going thread
« Reply #800 on: February 20, 2015, 11:30:23 AM »
Some days, it does all seem surreal.  In the hospital, dying of AIDS at 26 years old and suddenly close to turning 50.  My most vivid memory during that hospitalization was listening to my doctor telling the family that my passing was imminent and soon.  I was pretty ok with that until the hospital priest came in and gave me last rites....OH HELL NO, it pissed me off and forced an internal fortitude to fight.

Perhaps we're different from our negative counterparts as I cherish each birthday and am not bothered in the least by aging.  :)



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

Offline bubba53

  • Member
  • Posts: 352
Re: An on-going thread
« Reply #801 on: February 20, 2015, 02:26:39 PM »
That's so bizarre, I was in the hospital and was told on the second
day, was not responding to the Bactrim ,
and would not make it through the night. they couldn't get my
oxygen level up high enough and my organs would start shutting down.
Obviously they were wrong.
The weird part is they sent a priest to my room too !
I'm not even catholic , I rang for the nurse and told her to
get him the fuck out of my room !
 All his babbling about my sins set me off !

We built a new house and are living happily too ,
and not suddenly will be turning 60 in a few weeks !
Go Figure.
"Who put the pepper in the....Vaseline  ? " Coffee Butler

Offline Theyer

  • Member
  • Posts: 2,639
  • Current ambition. Walk the Dog .
Re: An on-going thread
« Reply #802 on: February 22, 2015, 06:46:50 AM »
Hello one and all,
Been away walking in Lancashire AONB Bowland Forest with large group off friends. Did me tons off good. With the help off other completed walks that I would off said no to before going. One particular one consisting off thin muddy path with a immediate drop to fast flowing river / long assents / lots off differcult obstacles to manage along the way / 5miles  or there abouts.

Walking poles very useful as are helpful patient friends.

Back in London now with Dental work tomorrow and hospital Thursday. Blah blah.

As soon as dental work is either finished or there is a gap off 4 weeks I am off to Orkney.
Easter will be spent in Suffolk so good flat walking and beaches .
This is what I want more off.   Country and the ability to walk in it.

Hope all is well with you all will check thro for news tonight
Love Michael
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,285
Re: An on-going thread
« Reply #803 on: February 22, 2015, 09:30:01 AM »
Michael!  We were worried about you!  Mitch just posted wondering where you were.  I'm so glad you're able to go for long walks and can enjoyed it.  You deserve it with everything you've been through. 
Much love-
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Theyer

  • Member
  • Posts: 2,639
  • Current ambition. Walk the Dog .
Re: An on-going thread
« Reply #804 on: February 22, 2015, 03:09:54 PM »
Sorry to cause worry , no wi-fi where I was no phone signal unless you stood apon a chair half way out the window in the old maids room. Had thought I had successfully posted on the train going up , guess the train connection broke oh bother.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline bubba53

  • Member
  • Posts: 352
Re: An on-going thread
« Reply #805 on: February 22, 2015, 04:08:01 PM »
Hi Michael,
Sounds like your doing great ,
A five mile walk on rough terrains is quite a work out !
Easter by the sea sounds great !
How's your weather ?
"Who put the pepper in the....Vaseline  ? " Coffee Butler

Offline wolfter

  • Member
  • Posts: 4,950
Re: An on-going thread
« Reply #806 on: February 23, 2015, 08:30:13 AM »
That's so bizarre, I was in the hospital and was told on the second
day, was not responding to the Bactrim ,
and would not make it through the night. they couldn't get my
oxygen level up high enough and my organs would start shutting down.
Obviously they were wrong.
The weird part is they sent a priest to my room too !
I'm not even catholic , I rang for the nurse and told her to
get him the fuck out of my room !
 All his babbling about my sins set me off !

We built a new house and are living happily too ,
and not suddenly will be turning 60 in a few weeks !
Go Figure.

I could easily be upset with the hospital for my treatment during the dark ages, but they were ill equiped to deal with virus as it's a small town, unremarkable hospital.  They pretty much simply provided palliative care at the time. 

I was obviously so sick that I couldn't hold down food or water.  I suddenly woke one morning and was starving.  I rang for a nurse and explained that I was hungry.  It was so weird how fantastic I felt.  She had a horrid look of fear on her face.  Immediately called for the shift doctor who promptly came in and examined me.

I hadn't noticed anything weird until I was almost done eating.  It was then that I noticed my skin was bright orange.  I was informed that I was co-infected with HepB and my liver was shutting down.  Soon, my pancreas followed.  Some how, I cleared that on my own and regained some health.

I disputed the diagnosis and it  caused issues with my spouse.  He obviously knew how HepB is spread and we had been together a long time and he obviously knew I wasn't an IV drug user so that only left cheating as a way of contracting it.  I believe I convinced him, but I'll always have that lingering doubt.

Fast forward to my new ID doctor a few years back; he tested me for all strains of Hepatitis.  It was only then I learned that I had never been exposed to that virus.  I lived for almost 2 decades thinking I had HepB only to find out that I didn't.  He even vaccinated me against it. 

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

Online mitch777

  • Member
  • Posts: 3,931
Re: An on-going thread
« Reply #807 on: February 23, 2015, 02:17:57 PM »
Hello one and all,
Been away walking in Lancashire AONB Bowland Forest with large group off friends. Did me tons off good. With the help off other completed walks that I would off said no to before going. One particular one consisting off thin muddy path with a immediate drop to fast flowing river / long assents / lots off differcult obstacles to manage along the way / 5miles  or there abouts.

Walking poles very useful as are helpful patient friends.

Back in London now with Dental work tomorrow and hospital Thursday. Blah blah.

As soon as dental work is either finished or there is a gap off 4 weeks I am off to Orkney.
Easter will be spent in Suffolk so good flat walking and beaches .
This is what I want more off.   Country and the ability to walk in it.

Hope all is well with you all will check thro for news tonight
Love Michael

Hey Michael! I was beginning to get worried about you and then you come back having had some wild adventure. Good for you and welcome back!

Hope all goes well with your dental work so you can enjoy some time in Orkney. As Betty said, you deserve it.

Love and hugs,
m.


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

Offline weasel

  • Member
  • Posts: 1,779
Re: An on-going thread
« Reply #808 on: February 24, 2015, 10:27:43 AM »
Some days, it does all seem surreal.  In the hospital, dying of AIDS at 26 years old and suddenly close to turning 50.  My most vivid memory during that hospitalization was listening to my doctor telling the family that my passing was imminent and soon.  I was pretty ok with that until the hospital priest came in and gave me last rites....OH HELL NO, it pissed me off and forced an internal fortitude to fight.

Perhaps we're different from our negative counterparts as I cherish each birthday and am not bothered in the least by aging.  :)

    Thank you  Wolfter & Bubba ,
                                                 I've been is such a down mood after I turned 60 last August .
   It is good to see others view on this aging thing .
     I know I shold be thrilled with each and everyday  but some days are hard  :-[

                                                                                                            Carl
" Live and let Live "

Offline bubba53

  • Member
  • Posts: 352
Re: An on-going thread
« Reply #809 on: February 24, 2015, 11:00:07 AM »
Hey Weasel,
60 is a good thing !
What bothers me is everything moved around,
What used to be here is there,
 
What used to be there is here,
Something's are missing altogether !

Saw myself in a three way mirror last summer trying on a bathing suit,
Thought someone else was in there with me !
Surly that's not my ass,and who let the air out of it !
Oh Well LOL.....
"Who put the pepper in the....Vaseline  ? " Coffee Butler

Offline wolfter

  • Member
  • Posts: 4,950
Re: An on-going thread
« Reply #810 on: February 27, 2015, 04:15:18 AM »
Goodness, I never expected I'd make it to 50 and it had nothing to do with AIDS.  I'll be damn fortunate if I make it to 60.  A lot of people who told me that if I didn't change my ways or I'd die young are now dead.   :) 

One thing I vowed to do early on if I survived was to try and enjoy each and every day even if it wasn't a great one.  I'm here on this earth for such a short period of time that I want to enjoy it on my terms. 

I'll never understand the mindset of the likes of the Koch brothers and many others.  Miserable existance if you ask me, having the ability to be so generous yet absorbed in selfish greed and disliked so badly.  How these types of people don't realize that being hated isn't a great legacy.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Theyer

  • Member
  • Posts: 2,639
  • Current ambition. Walk the Dog .
Re: An on-going thread
« Reply #811 on: February 27, 2015, 05:13:05 AM »
It's a paradox this ageing thing  , we do all we can to stay alive yet get depressed with the reality off ageing . I also have days when I beat myself up for not greeting each day as though I where  Maria von Trap on E , all because I have battled through a few might die months .

In our position , sorry in MY position I think I would be mad not to be depressed at times , for some situations it's the healthy response. What is not healthy is doing nothing about it once it's been recognised.

So hugs to all , double hugs to birthday men & women ....Carl &  David spring to mind.

I am about to tie on my apron , nipple half a breakfast E and do some decorating
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Miss Philicia

  • Member
  • Posts: 24,731
  • celebrity poster, faker & poser
Re: An on-going thread
« Reply #812 on: March 03, 2015, 11:48:27 AM »
I've been remiss with updates on my on-going efforts at treating my chronic acute neuropathy pain. As previously mentioned I began opioid treatment (specifically methadone) which had to be titrated slowly because of the nature of this specific medication's half-life. I've now been on 30mg/daily for a month, and it's only been partially successful. They may raise it to 45mg/daily but that will be the final amount they're willing to do because of my sleep apnea issue, even though the treatment for that is entirely successful.

So during this past week I went forward with the one-week trial of a neurostimulator device. The device during the trial clips on your belt and is attached to lead wires, which were inserted during outpatient surgery into my back, hooking somehow to my spinal nerve (at the bottom as that's closest to where my pain is located, being my feet). The first several days I thought the whole process was useless and not working, but once I got used to the electronic sensation and could handle increasing the frequency levels to the highest setting I suddenly was getting quite significant pain relief. Beyond any relief I have experienced with these opioids.

Today I went in to have the lead wires in my back removed, and I've now scheduled the full surgery for a neurostimulator implant for March 19th.
"Iíve slept with enough men to know that Iím not gay"

Offline Jeff G

  • Member
  • Posts: 14,429
  • How am I doing Beren ?
Re: An on-going thread
« Reply #813 on: March 03, 2015, 12:05:15 PM »
Thats great news Miss P, you deserve a break after all you have been through .

Offline Tonny2

  • Member
  • Posts: 620
Re: An on-going thread
« Reply #814 on: March 03, 2015, 12:59:43 PM »


         ojo      good for you Miss Philicia...good luck with your procedure, I will thinking about you that day, thanks for sharing, I will look into the info you sent me..hugs    ojo

Offline wolfter

  • Member
  • Posts: 4,950
Re: An on-going thread
« Reply #815 on: March 03, 2015, 08:10:34 PM »
That's great news David.  As I've said before, I'm ever so grateful to never have experienced  that level of pain that you and others have.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Online mitch777

  • Member
  • Posts: 3,931
Re: An on-going thread
« Reply #816 on: March 03, 2015, 08:25:18 PM »
I missed this until now. I last thought it wasn't working but it sounds promising now.

Geez, between your implant and apnea devices you are wired to the max.
32 years hiv+ (oct. 2013) with a curtsy.

Offline pozniceguy

  • Member
  • Posts: 1,207
  • Niceguy Dallas
Re: An on-going thread
« Reply #817 on: March 04, 2015, 12:50:17 AM »
just  a follow up  on  visits  to  Oncologist....decided on a  treatment   for  the low level   prostate  cancers   will  start  thurs (  5  mar)  with  inplant of  markers  for  targeted  radiation...(  Dr  claims  over  95%  success). then  a  Mapping session  of the locations to  concentrate  xray treatment....  then  the  bad news....5  days a week  for  8  weeks  20 min  session...outpatient.... claims  little  side effects...from most patients.


apparently  this  is an Xray  machine  guided  like using  GPS  coordinates  but  this  uses the  "markers"  to  triangulate  position on prostate  like   satelites    are used   for  GPS

Nick
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline harleymc

  • Member
  • Posts: 283
Re: An on-going thread
« Reply #818 on: March 04, 2015, 03:36:40 AM »
PNG,
it's interesting how treatments vary from patient to patient, clinic to clinic, country to country. I have a friend who has some radium pellets inserted to tackle a prostate tumour.
He's getting a bit tired of the glow in the dark jokes, but so far it seems to be working for him.
Best of luck with your treatment.

Offline bubba53

  • Member
  • Posts: 352
Re: An on-going thread
« Reply #819 on: March 04, 2015, 11:12:07 AM »
Hi Nick,
Hope all goes well, and the side affects are minimal .
Also hope you don't have too far to travel.
Wade
"Who put the pepper in the....Vaseline  ? " Coffee Butler

Offline wolfter

  • Member
  • Posts: 4,950
Re: An on-going thread
« Reply #820 on: March 04, 2015, 12:57:55 PM »
Here's to hoping your're part of the 95%.  Take care of yourself and best wishes buddy.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline pozniceguy

  • Member
  • Posts: 1,207
  • Niceguy Dallas
Re: An on-going thread
« Reply #821 on: March 04, 2015, 02:04:09 PM »
thnx  guys     discussed  treatment options  including the  "Pellets"  seems  most  Drs  stop using that  one recently  too  many long term  side effects to  other organs  around  the prostate   (  colon and some  muscle)  also  a  "one day  treatment"   6 hrs of  chemical drill  though  tubes inserted  directly  in prostate..very  invasive..very  hard on patient (  6  hours of  being  "sling position"with  chemical  drips )  so  bad news  clinic is one of two in Dallas  uses this  technique   both  more  than  30  miles.... this  clinic  primarily  Prostate  patients... other  primarily  breast  cancer
so  just  plan  to be a  "traveller"  for the  next  months

BTW   Greg   I  plan  to  be  a survivor   made it  so far  with the  bug  over  20 years  not letting this be the  "killer"


Nick
« Last Edit: March 04, 2015, 02:06:21 PM by pozniceguy »
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline Tonny2

  • Member
  • Posts: 620
Re: An on-going thread
« Reply #822 on: March 04, 2015, 02:28:53 PM »


      ojo     hello pozniceguy, just want to say to you, good luck, I will be sending you good vibes during your treatment...hugs    ojo

Online mitch777

  • Member
  • Posts: 3,931
Re: An on-going thread
« Reply #823 on: March 04, 2015, 03:22:06 PM »
Nick,

Best wishes for you during your treatments. It all sounds promising.

m.
32 years hiv+ (oct. 2013) with a curtsy.

Offline aztecan

  • Member
  • Posts: 5,482
  • 29 years positive, 57 years a pain in the butt
Re: An on-going thread
« Reply #824 on: March 15, 2015, 04:57:15 PM »
Hi all,

A few interesting things have happened recently, which I thought I would pass along.

First, my doctor said he recently learned that using Advair Diskus inhalers with integrase inhibitors isn't a good idea. I don't remember the particular medication in the Advair, but the bottom line is he switched me from that to Serevent and Qvar.
So, now I use two inhalers in the morning and two at night.

The second interesting thing is I finally figured out why I have been such a clutz.

I have lost most of the feeling in my fingers. I guess it is from the neuropathy.

I really have to concentrate when I pick up or carry something because I will just suddenly drop whatever it is.

I have a client who was telling me how she handles this. She always looks at her hands when she is carrying something.

Sounds like good advice to me. I just wish I hadn't taken so long to figure it out.

Live and learn, live and learn.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline bubba53

  • Member
  • Posts: 352
Re: An on-going thread
« Reply #825 on: March 15, 2015, 05:15:47 PM »
Hi Mark,
Sorry to hear your getting that numbness in your hands,
Sounds like a real pain in the ass !!

Also that your having trouble with your inhalers , are they helping ?
I just turned 60 , I was a heavy smoker till ten years ago,
And worry if COPD is in my future,time will tell .
Be Well , Wade
"Who put the pepper in the....Vaseline  ? " Coffee Butler

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,285
Re: An on-going thread
« Reply #826 on: March 15, 2015, 08:05:40 PM »
Mark, I've had that trouble with dropping things the past couple years due to the neuropathy. Anymore I just try to concentrate on what it is I'm needing to carry, as some things are more fragile than others lol. 

Hadn't heard about the Advair, interesting.  My doctor put me on, God, now I can't remember what she put me on unless I click over to my thread lol.  Terrible.  I know it wasn't Advair though. 

Good luck navigating neuropathy in the upper extremities.  Not something I've mastered.  You're probably better at it.  (Sorry, I've got major brain farts.). I blame that on the breathing treatments they're forcing me to endure lol.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline wolfter

  • Member
  • Posts: 4,950
Re: An on-going thread
« Reply #827 on: March 16, 2015, 09:20:39 AM »
Numbness in the extremities, yeah I definitely relate.  I've raised these concerns for a while now but there is no way I can look at my hands while carrying things as I'm sure I'd end up falling or walking into something.  :)

Now I need to check if ProAir inhalers cause the same issues.  I use mine in the morning then at night.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Online mitch777

  • Member
  • Posts: 3,931
Re: An on-going thread
« Reply #828 on: March 21, 2015, 03:52:32 PM »
Add another one to the dropsy list.

While I have a problem with my left arm/ hand due to degenerative disk disease I still find myself dropping things with the other hand as well. Also, I've noticed increased klutziness with my feet. I don't have neuropathy nor use an inhaler but feel that it is a more general neurological problem, at least for me.

I try not to let it bother me but I do often wonder about it getting progressively worse.

While in Palm Springs I noticed that my Parkinson's-like "bobble head" tremors were getting much worse. I asked about it months ago when I saw the neurosurgeon and was told that it most likely wasn't related to my disk issues so I guess it's just another thing to keep an eye on. :P

Speaking of Palm Springs...

We had a wonderful time! There were a few days that I really wasn't feeling well but expected.

We took a look at several condos that we think might be in our price range. Liked 2 out of 5. We were relieved to hear that the electric bill would be FAR cheaper than our oil bill is here.

The people were so friendly and I got the sense that PS has a wonderful sense of community. Everyone that I spoke to said they felt the healthcare was very good.

Kenny seemed (for the most part) to love the city and I think has finally come around to the idea of moving there.

Came home last night to 27F and snow flying on our drive from the airport. 2" last night and another inch this morning. We still have over a foot on the ground!

I want spring and I want it now!!! Ha!

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

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,285
Re: An on-going thread
« Reply #829 on: March 21, 2015, 06:42:00 PM »
M, I'm so glad that you all had a good time and are resolved to make that your new home.  I'm sorry about your Parkinson's symptoms.  It's frustrating, I get it.  And I understand.  We get it.  Just hang in.  I mean, what else can we do, right?  I just keep telling myself to keep moving.

Sorry you're dealing with that continued winter weather.  That sucks.  We're just getting out of the freezing weather, it's in the 50's here.  It's like a miracle. But, in a couple days it's supposed to be in the 30's. Typical spring.   

Anyway, glad to have you back!
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline bubba53

  • Member
  • Posts: 352
Re: An on-going thread
« Reply #830 on: March 22, 2015, 04:14:54 PM »
Hey Mitch ,
Glad you had a good time !
The snow is really leaving us fast now that the sun is out,
and high in the sky.
Don't fret spring is on the way !
"Who put the pepper in the....Vaseline  ? " Coffee Butler

Offline Tonny2

  • Member
  • Posts: 620
Re: An on-going thread
« Reply #831 on: March 23, 2015, 12:51:28 PM »


         ojo      Hello Mitch, just to send you a big hug, its on your way       ojo

Online mitch777

  • Member
  • Posts: 3,931
Re: An on-going thread
« Reply #832 on: March 23, 2015, 05:43:23 PM »
Thanks Betty, Wade, and Tonny.

Sunny today but no melting. 31F was our high but the coming week looks good so I think it might be safe to say goodbye to winter.

I had expected to come home with a message regarding my upcoming neck surgery appointment. I called them this morning and left a message but my call wasn't returned.

Was hoping to get this over with in April and had also hoped that my disability approval letter would have arrived already so that I could even think about AMG this year. There's still time I guess.







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

 


Terms of Membership for these forums
 

© 2015 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.