Welcome, Guest. Please login or register.
March 29, 2024, 01:56:56 am

Login with username, password and session length


Members
  • Total Members: 37614
  • Latest: bondann
Stats
  • Total Posts: 772947
  • Total Topics: 66310
  • Online Today: 731
  • Online Ever: 5484
  • (June 18, 2021, 11:15:29 pm)
Users Online
Users: 0
Guests: 731
Total: 731

Welcome


Welcome to the POZ 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 “Do I Have HIV?” posting guidelines. Click here for posting guidelines pertaining to all other POZ 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: so, uh... this kinda sucks  (Read 9894 times)

0 Members and 1 Guest are viewing this topic.

Offline Miss Philicia

  • Member
  • Posts: 24,793
  • celebrity poster, faker & poser
so, uh... this kinda sucks
« on: November 18, 2010, 04:13:31 pm »
I've been coasting along on fairly good health for the last several years, and I'm still fine from a "lab numbers" standpoint.  But in the past year what seemed like my peripheral neuropathy increasing has gotten way worse -- basically I quite often have no sensory effect in all of my toes.  If I rub my toes against my other foot they're just dead, can't feel hardly anything.  Obviously that also effects my walking, but even just lying down on the sofa they act up and are painful, and then at times it's bad and I can't even sleep for hours.  Also, the effect of really bad lipoatrophy on the soles of my feet, which has been bad for ~12 years, seems worse, but not because anything I'm on now is causing more lipo, but just because my feet have had no cushion for that long.  

Yeah yeah, I know most of us LTSers complain about this, but if you want to know how bad mine is during my 4-month HIV doctor visit/check up yesterday he came to the conclusion that what's happening isn't really an increase of PN issues, but that my longterm lipo issues have either caused a build up of whatever that bone is called where your toes meet your feet (sorry, forget the name) or it's been like that pre-HIV and the lipo just made it much worse over time.  I'm going with the latter because I then admitted that about a decade ago I went to a podiatrist when this all began and she wanted me to undergo foot surgery, in both feet. I brushed it off at the time as it was around when I stopped working and all my insurance issues were complicated.  By the time that stuff settled down I wrote it off to there not being much knowledge of what lipo was when I went, which was probably in 1999.

So sometime I guess in the first half of 2011 I'll go and do this finally.  I just hope it resolves this issue as it's to the point where I even hobble around in my tiny apartment.  I still have to beef up my insurance coverage as Medicare alone won't cover it all, so I met with my case manager about that.  Then it's off to a podiatrist for a real examination.  If I have both feet done I'm sure I'll be out of commission for weeks and will have to recuperate at my parents' house in Virginia... fun!

On the plus side my lab numbers are still fab: 1268 cd4, 49%, <20 viral load  :P
« Last Edit: November 18, 2010, 04:15:55 pm by Miss Philicia »
"I’ve slept with enough men to know that I’m not gay"

Offline Jeff G

  • Administrator
  • Member
  • Posts: 17,064
  • How am I doing Beren ?
Re: so, uh... this kinda sucks
« Reply #1 on: November 18, 2010, 04:30:23 pm »
I'm so sorry to hear you are having this difficulty , If I'm not mistaken an old girlfriend of mine just had the same surgery or it sounds damn close to it . She is not poz but for some reason had a buildup in that area of the foot you spoke of . She is on my FB page if you want to ask her about it .

I talked to her this week and she said it wasn't to big of an ordeal to endure . Come to my house to recover and I will take care of you , this is not a threat in case you are wondering .
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline Miss Philicia

  • Member
  • Posts: 24,793
  • celebrity poster, faker & poser
Re: so, uh... this kinda sucks
« Reply #2 on: November 18, 2010, 05:00:14 pm »
I'm mostly just venting right now, like I said I won't know exactly what is needed until I go to the actual podiatrist.  But thanks for the recoup offer.  Really my parents are OK for me to go to -- they're not completely unbearable.
"I’ve slept with enough men to know that I’m not gay"

Offline Jeff G

  • Administrator
  • Member
  • Posts: 17,064
  • How am I doing Beren ?
Re: so, uh... this kinda sucks
« Reply #3 on: November 18, 2010, 05:11:52 pm »
I'm mostly just venting right now, like I said I won't know exactly what is needed until I go to the actual podiatrist.  But thanks for the recoup offer.  Really my parents are OK for me to go to -- they're not completely unbearable.

Well , I guess I can put the rat and silver tray away  ;) .
« Last Edit: November 18, 2010, 05:14:25 pm by jg1962 »
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline Theyer

  • Member
  • Posts: 2,701
  • Current ambition. Walk the Dog .
Re: so, uh... this kinda sucks
« Reply #4 on: November 18, 2010, 06:01:25 pm »
Yes it does Miss P
Thankfully 10 years ago I got a referral to a "pain control consultant" after being encouraged to describe the pain in exhausting detail we started on a interesting year off experimentation with conventional pain control  , antidepressant , anti inflammatory drugs and grass/hash. This actually worked with I think  2 co -proxamol x a day, low dose 35mg venlifaxin {anti-d } topped off with low dose off morphine based drug. These had to be taken regularly and on time to get full benefit . I am on a different combo now but same principles and sadly no dope as that's all been knocked on the head.

It transformed daily life for me and as long as I adhere to the regime I am mobile , with added mind tricks from a physiologist things tick along o.k.

Good luck with what ever you embark on.
mhtv
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline bear60

  • Member
  • Posts: 4,105
Re: so, uh... this kinda sucks
« Reply #5 on: November 18, 2010, 07:07:31 pm »
aw David, its always something.

I thought you were going to tell us that you had just contracted the DREADED stomach flu ( 24 hour bug) ( gastrointeritis) that seems to be going around.  Our friend Steve had it, then Kurt, who ran a 101 fever, projectile vomit that ran down the walls, and diarreah that filled up the john.  He was so tired from all that vomiting and shitting  and fever and dehydration,  I was afraid I'd be taking him to the ER.  But somehow we managed to pull him thru it. 



Then I got it.
Poz Bear Type in Philadelphia

Offline Jeffreyj

  • Member
  • Posts: 1,403
Re: so, uh... this kinda sucks
« Reply #6 on: November 18, 2010, 11:24:44 pm »
Miss P,
I can totally understand you're wanting to vent. I have had PN for a decade now. It is no fun, and it can be unbearable at times. When you are in pain EVERY day, it just sucks. I have been through the mill with this, and it is no fun. I have no feeling in the bottom of my feet, but my toes have not acted like yours.
 Then I get the sharp shooting pains, that seem to come out of nowhere! It's crazy stuff. Some days I dread just standing up.

I hope your surgery gives you some relief. Keep us posted. Sorry you are suffering.
Positive since 1985

Offline RapidRod

  • Member
  • Posts: 15,288
Re: so, uh... this kinda sucks
« Reply #7 on: November 19, 2010, 12:00:35 am »
Metatarsals?

Offline Miss Philicia

  • Member
  • Posts: 24,793
  • celebrity poster, faker & poser
Re: so, uh... this kinda sucks
« Reply #8 on: November 19, 2010, 12:17:55 am »
Yeah, when I looked at a diagram I think that's it, and I think it's just the middle (3rd?) one that is suspected.
"I’ve slept with enough men to know that I’m not gay"

Offline aztecan

  • Member
  • Posts: 5,530
  • 36 years positive, 64 years a pain in the butt
Re: so, uh... this kinda sucks
« Reply #9 on: November 19, 2010, 12:55:57 am »
Hey David,

Is it calcification in the joint where the metatarsal is attached to whatever that other bone is called?

Just wondering because when they told me I needed surgery on my foot, it was a buildup behind my great toe, otherwise known as my big toe, on my left foot. They were talking about grinding it down and cutting out a portion of it.

Sorry this is happening to you.

HUGS,

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

Offline OneTampa

  • Member
  • Posts: 3,021
  • "Butterflies are free."
Re: so, uh... this kinda sucks
« Reply #10 on: November 19, 2010, 06:53:59 pm »
Ms. P.

Sorry to hear about your foot troubles.  I hope you get better soon.
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,786
Re: so, uh... this kinda sucks
« Reply #11 on: November 20, 2010, 04:40:56 am »
Sorry you're going through this.  As you know, I've had severe PN issues for years, but this sounds even more complicated than just PN.  And much more painful.  I hope you're able to get this resolved, and if it's after the first of the year, I hope you're able to enjoy the holidays.  No black Friday shopping for you, aye?
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info https://www.poz.com/basics/hiv-basics/safer-sex
Please check out our lessons on PEP and PrEP. https://www.poz.com/basics/hiv-basics/pep-prep

https://www.poz.com/basics/hiv-basics/treatmentasprevention-tasp

Offline Miss Philicia

  • Member
  • Posts: 24,793
  • celebrity poster, faker & poser
Re: so, uh... this kinda sucks
« Reply #12 on: November 21, 2010, 08:44:01 am »
I'm not big on the idea of the soles of my fee being opened and having the bones filed down... but it help me to walk better the next twenty years than I will do it.
"I’ve slept with enough men to know that I’m not gay"

Offline Snowangel

  • Member
  • Posts: 1,429
Re: so, uh... this kinda sucks
« Reply #13 on: November 21, 2010, 10:34:19 am »
Sorry to hear you are in such pain.  I hope the podiatrist can figure out the best way to help you. I'm just curious, how did the pain start in your feet? The bottom of my feet have started to throb for the last couple of years.

Feel better,
Snow
Of all the things you wear, your expression is the most important

The heaviest thing you can carry is a grudge..

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

One thing you can't recycle is wasted time.

Offline sharkdiver

  • Member
  • Posts: 1,353
Re: so, uh... this kinda sucks
« Reply #14 on: November 21, 2010, 01:10:18 pm »
Geez Miss P.
          Hopefully the recovery won't be too long and hopefully you'll have some relief from all the crap with your feet.

Offline jm1953

  • Member
  • Posts: 295
Re: so, uh... this kinda sucks
« Reply #15 on: November 21, 2010, 11:08:22 pm »
Miss P,

I have pretty much the same problem with little cushioning on the bottom of my feet.  Also a bone problem similar to yours.  My podiatrist was going to do surgery, then we tried Voltran topical ointment for awhile.  That seemed to help.  I also had a pair of orthodic insoles casted for about $400 and they have made a terrific difference.  Surgery may still be in the future for me, but in the meantime, I'm o.k. with this. 

For what it's worth.

It seems more and more long termers are losing fat in the bottoms of their feet.  My podiatrist is up on it, but my derm and even primary physician wasn't aware of it.

At any rate, I relate and wish you the very best whatever you do.

Best always,

Jeff
Positive 29 years. Diagnosed 10/1987.  Current CD 4: 720: Viral load: almost 100.  Current drug regimen, Tivicay, Emtriva, Endurant, Wellbutrin, Clonazepam, Uloric, Losartan Potassium,Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

Offline AlanBama

  • Member
  • Posts: 3,670
  • Alabama: the 'other' 3rd World Country!
Re: so, uh... this kinda sucks
« Reply #16 on: November 22, 2010, 11:40:35 am »
Sounds bad honey...would they do surgery on both feet at the same time?  Or one, then the other?  I guess you'll know more after you see the podiatrist.   I hope that it all turns out well, and you'll have a quick recovery....

HUGS, Alan

PS - I still think one of us needs to invent some "Tempur-pedic" shoes   ;)
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Miss Philicia

  • Member
  • Posts: 24,793
  • celebrity poster, faker & poser
Re: so, uh... this kinda sucks
« Reply #17 on: November 23, 2010, 03:59:13 pm »
The podiatrist I saw over a decade ago said we could either do them both at once, or one after the other, depending on if I could easily miss work.  Since I'm not working I just figure I'd rather have it all done at once, and then let my dear Mommie take care of me -- home cooking does a body good, even if it means being her hostage.  I assume I'd also have crutches for a while.

Oh, my other new thing is wearing elastic knee supports -- but not on my bony knees, but on my bony elbows.  My elbows run into the stainless steel arm rests on my computer chair and over time that's caused callouses to develop there too, so I put on callous lotion and then cover it with these elastic supports so that the greasy substance doesn't get everywhere.  I need to find something like this for when I sleep so I don't ruin my sheets.

I alos have one of those water foot massagers and I was using it for a while but I've not done so this past month, even though it does help keep my skin from getting so flakey.

I swear I feel like a 85 year old woman in a rest home :(
"I’ve slept with enough men to know that I’m not gay"

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,786
Re: so, uh... this kinda sucks
« Reply #18 on: November 23, 2010, 05:48:56 pm »
What kind of callous lotion do you use, and does it help?
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info https://www.poz.com/basics/hiv-basics/safer-sex
Please check out our lessons on PEP and PrEP. https://www.poz.com/basics/hiv-basics/pep-prep

https://www.poz.com/basics/hiv-basics/treatmentasprevention-tasp

Offline Miss Philicia

  • Member
  • Posts: 24,793
  • celebrity poster, faker & poser
Re: so, uh... this kinda sucks
« Reply #19 on: November 23, 2010, 11:16:09 pm »
What kind of callous lotion do you use, and does it help?

Yes, I fork up the pricey dough for this.  They carry it at Nordstroms and Niemans, and you can order it on line from Kiehls.
« Last Edit: November 23, 2010, 11:28:45 pm by Miss Philicia »
"I’ve slept with enough men to know that I’m not gay"

Offline Jeff G

  • Administrator
  • Member
  • Posts: 17,064
  • How am I doing Beren ?
Re: so, uh... this kinda sucks
« Reply #20 on: November 24, 2010, 12:06:17 am »
I recently rediscovered the value of good old fashioned cheap Vaseline , my dermatologist told me to use it after some surgery I had done recently and it worked really well on the dried skin . I wouldn't want to get it all over the house but it sure did work quickly .   
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,786
Re: so, uh... this kinda sucks
« Reply #21 on: November 24, 2010, 05:45:36 am »
Yes, I fork up the pricey dough for this.  They carry it at Nordstroms and Niemans, and you can order it on line from Kiehls.

Yeah, I was wondering if it would work on feet also.  I get some horrific callouses on my feet, and use a callous shaver.  The problem with that is, I always cut myself, and with extremities bleeding so freely, I have to put on gauze and surgical tape.  Anyway, thanks for the link.   

I hope the surgery goes well, when you have it done.  Maybe the home cooking will help with the healing process. :)
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info https://www.poz.com/basics/hiv-basics/safer-sex
Please check out our lessons on PEP and PrEP. https://www.poz.com/basics/hiv-basics/pep-prep

https://www.poz.com/basics/hiv-basics/treatmentasprevention-tasp

Offline Miss Philicia

  • Member
  • Posts: 24,793
  • celebrity poster, faker & poser
Re: so, uh... this kinda sucks
« Reply #22 on: November 24, 2010, 07:08:35 am »
Yeah, I was wondering if it would work on feet also.  I get some horrific callouses on my feet, and use a callous shaver.  The problem with that is, I always cut myself, and with extremities bleeding so freely, I have to put on gauze and surgical tape.  Anyway, thanks for the link.  

I hope the surgery goes well, when you have it done.  Maybe the home cooking will help with the healing process. :)

Maybe you need to have your foot opened up and your bones shaved off like I'm going to do! :)

And jg, I should try the cheap vaseline route next -- I got the Kiehls as a Christmas gift some time ago, though back in the day when I had money I shopped there religiously.
"I’ve slept with enough men to know that I’m not gay"

Offline Jeff G

  • Administrator
  • Member
  • Posts: 17,064
  • How am I doing Beren ?
Re: so, uh... this kinda sucks
« Reply #23 on: November 24, 2010, 08:38:02 am »
Maybe you need to have your foot opened up and your bones shaved off like I'm going to do! :)

And jg, I should try the cheap vaseline route next -- I got the Kiehls as a Christmas gift some time ago, though back in the day when I had money I shopped there religiously.

When I was in chemo my feet were cracked open and actually bled a time or two . A nurse gave me a sample Kit of a product called Zim's crack creme and it worked great for all of us dealing with side effects from chemo and all the skin issues , its not an expensive product either .
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,786
Re: so, uh... this kinda sucks
« Reply #24 on: November 24, 2010, 05:55:05 pm »
Maybe you need to have your foot opened up and your bones shaved off like I'm going to do! :)

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

Condom and Lube Info https://www.poz.com/basics/hiv-basics/safer-sex
Please check out our lessons on PEP and PrEP. https://www.poz.com/basics/hiv-basics/pep-prep

https://www.poz.com/basics/hiv-basics/treatmentasprevention-tasp

Offline Theyer

  • Member
  • Posts: 2,701
  • Current ambition. Walk the Dog .
Re: so, uh... this kinda sucks
« Reply #25 on: November 26, 2010, 07:21:59 am »


I swear I feel like a 85 year old woman in a rest home :(
[/quote]

You really have eclectic taste.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

 


Terms of Membership for these forums
 

© 2024 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.