Author Topic: An on-going thread (Read 327626 times)

wolfter · « **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.

Wade · « **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.

Theyer · « **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

BT65 · « **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

Theyer · « **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.

Wade · « **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 ?

wolfter · « **Reply #806 on:** February 23, 2015, 08:30:13 am »

Quote from: bubba53 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.

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.

mitch777 · « **Reply #807 on:** February 23, 2015, 02:17:57 pm »

Quote from: Theyer 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

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.

weasel · « **Reply #808 on:** February 24, 2015, 10:27:43 am »

Quote from: wolfter 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.

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

Wade · « **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.....

wolfter · « **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.

Theyer · « **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

Miss Philicia · « **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.

Jeff G · « **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 .

Tonny2 · « **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

wolfter · « **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.

mitch777 · « **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.

pozniceguy · « **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

harleymc · « **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.

Wade · « **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

wolfter · « **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.

pozniceguy · « **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

Tonny2 · « **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

mitch777 · « **Reply #823 on:** March 04, 2015, 03:22:06 pm »

Nick,

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

m.

aztecan · « **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

Wade · « **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

BT65 · « **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.

wolfter · « **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.

mitch777 · « **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.

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!

BT65 · « **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!

Wade · « **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 !

Tonny2 · « **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

mitch777 · « **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.

wolfter · « **Reply #833 on:** March 30, 2015, 12:48:22 am »

It is going to take me quite a while to scan through all the threads. I hate when I'm absent for such a long period of time but my schedule has been a pleasant hell lately.

wolfter · « **Reply #834 on:** April 07, 2015, 04:00:37 pm »

I'll be having my BDS next month and hope it shows improvement. Although it doesn't really matter now that Humana won't approve the drug. I'm not doing the injections as I would have to drive to downtown Columbus every month and pay $100 for each appointment.

Wade · « **Reply #835 on:** April 07, 2015, 05:00:02 pm »

Hey Wolfe,
Good luck next month,you need strong bones !
Keeping things crossed for you.
Saw my ID doc today , is calling in a script for tybost to replace nasty Norvir
Maybe will help with Lipo issues.

Hope my insurance approves it as I just got Norvir.
We will see

wolfter · « **Reply #836 on:** April 07, 2015, 05:11:54 pm »

Quote from: bubba53 on April 07, 2015, 05:00:02 pm

Saw my ID doc today , is calling in a script for tybost to replace nasty Norvir
Maybe will help with Lipo issues.

Hope my insurance approves it as I just got Norvir.
We will see

Not sure if you saw my comments about Norvir? I switched out Isentress for Norvir and Prezista due to severe insomnia issues. Not sure why as I had a previous experience with this medication. I'm sure it helps some, but for those like me, this was a horrid drug. I was so sleep deprived that I was anxious to get some rest. Well, I got what I asked for. I slept 12 - 14 hours a day and felt droggy. After 3 months and constantly buying new underwear, I switched back.

Now I'm back to a few hours sleep per night but what's one to do? The lesser of the 2 evils! At least my productivity is back into high gear. I am directly responsible for my horrible resistance profile so it's all in stride. Starting in the late 80's, I took the newest and best things available but could only last so long before the quality v's quantity aspect reared its head.

Wade · « **Reply #837 on:** April 07, 2015, 08:22:41 pm »

Hey Wolf,
I do remember, think we were in the same thread ,oh well doesn't matter.
Mean time I also take issentress along with the prizista and Norvir .
I have been taking nasty Norvir since the liquid form.
Many years now , I'm done ! Lipo yuk !

I had a problem with insomnia years ago , I think when I started sustiva, could
Be wrong. I was miserable and cranky ! Not much good at work either,
I need 8 hrs a night or I'm no good . Long story short I started then on a sleep aid,
One at bed time , out like a light and sleep all night.
Still the same dosage after ten years . Not on any anti depressants or pain meds
To interact though.

BT65 · « **Reply #838 on:** April 08, 2015, 01:09:44 pm »

Quote from: wolfter on April 07, 2015, 04:00:37 pm

I'll be having my BDS next month and hope it shows improvement. Although it doesn't really matter now that Humana won't approve the drug. I'm not doing the injections as I would have to drive to downtown Columbus every month and pay $100 for each appointment.

They won't approve the med the dr prescribed for you?

Why would you have to drive to downtown Columbus every month? Didn't you say you have a needle phobia anyway? I believe my doctor only has me approved through next month so far. I'm hoping they approve 2 year's worth of Forteo. That's the required treatment time.

wolfter · « **Reply #839 on:** April 08, 2015, 01:18:02 pm »

Humana doesn't approve most Osteo drugs. There are a couple but I am still mad as hell that they can decide my medical care. If I go for the monthly injectable, Medicare pays for it since it's considered a medical procedure. (a shot). I will discuss with my doctor if he's able to do the procedure and such. I don't do well with big city driving and don't feel like committing to it every month.

There is no way I could get to the point of injecting myself. We were supposed to use a needle on ourselves in nursing school and I thought I'd fail as I never did do it. She gave me a pass since I had no issue poking the volunteers.

BT65 · « **Reply #840 on:** April 08, 2015, 01:24:42 pm »

But I take the Forteo every day, how are you going to do it once a month?

wolfter · « **Reply #841 on:** April 08, 2015, 01:27:12 pm »

Quote from: BT65 on April 08, 2015, 01:24:42 pm

But I take the Forteo every day, how are you going to do it once a month?

Forteo is a daily injectable, but there are 2 others also. I can't recall their names right now but one is monthly and other is every 6 months. My specialist said as a minimum, I should do it at least monthly although they recommend the daily Forteo.

BT65 · « **Reply #842 on:** April 08, 2015, 01:35:16 pm »

Quote from: wolfter on April 08, 2015, 01:27:12 pm

Forteo is a daily injectable, but there are 2 others also. I can't recall their names right now but one is monthly and other is every 6 months. My specialist said as a minimum, I should do it at least monthly although they recommend the daily Forteo.

Oh yes! Reclast and something else, can't remember. Do you know what you're going to do?

wolfter · « **Reply #843 on:** April 08, 2015, 01:47:16 pm »

I have one dose left of Boniva which is monthly. At that point, we'll see if this drug did any good in the 2 years I've been taking it. I don't see why we would possibly switch out meds before determining if it worked. I'd think my doctors would also want to know this information as they readily admit they don't have a lot of knowledge concerning bone loss and HIV.

BT65 · « **Reply #844 on:** April 08, 2015, 02:30:43 pm »

Mine don't either. As usual, we're the guinea pigs.

pozniceguy · « **Reply #845 on:** April 10, 2015, 05:57:19 pm »

hey guys just checking in about the prostate Xray treatments finished the 4th week no real issue so far just a few extra trips to the toilet to pee hope this is as bad as it gets...4wks to go
Nick

pozniceguy · « **Reply #846 on:** April 10, 2015, 06:05:34 pm »

Mitch so sorry to hear about the "dropping" issues I had a period of "stumbling" in the early days because of neuropathy in feet kept "missing" the edge of the steps.. vastly improved with practice and some help from a few days in the Rehab room with a trained person
PS sounds great.... I know a few guys that moved there (have to look for their address)..they also bought a place in Mexico and move back and forth every few months. both places are really friendly and open minded they tell me

Nick

BT65 · « **Reply #847 on:** April 11, 2015, 04:25:51 am »

Quote from: BT65 on April 08, 2015, 01:35:16 pm

Oh yes! Reclast and something else, can't remember. Do you know what you're going to do?

I believe the other one is Prolia. I think that's it.

wolfter · « **Reply #848 on:** April 12, 2015, 02:03:50 pm »

Quote from: BT65 on April 11, 2015, 04:25:51 am

I believe the other one is Prolia. I think that's it.

Yep that's it.

On a dreaded side note, the insomnia is back; almost worse than ever. It must and has to be the Isentress. Another things I've discovered is that this drug must also block the feelings of hunger. When I switched it out, I suddenly had an appetite and wanted food. Now I'm no longer having hunger pains and must remember to eat. There something in that there drug

OK, now off to look at an antique bedroom suite that I'll probably buy.

luvs and hugs.

mitch777 · « **Reply #849 on:** April 12, 2015, 05:14:00 pm »

Greg,

Did you try to increase your dose of Trazadone to 100mg as I mentioned? The max dose is 200mg so it may be worth a try. I'll repeat this again to you... I had insomnia too while on Isentress and my doc prescribed 50mg. I gave it two weeks and called him to up the dose to 100mg. It did the trick for a long period of time for me anyway.

I think your loss of appetite could also be related to lack of sleep. Just a guess. Ask your doctor.

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Author Topic: An on-going thread (Read 327626 times)